Acute Myelogenous Leukemia (AML) Support Group
Acute myelogenous leukemia (AML), also known as acute myeloid leukemia, is a cancer of the myeloid line of blood cells. Patients with AML usually present with symptoms such as fatigue, bleeding, infection, prompting medical attention. An abnormal blood test reading will then result in further testing in a hospital with a hematologist to determine AML.
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Let me first say that I am not a doctor, nor an I am giving any medical advice. I am a daughter who loves her father very much and we, as a team, are doing everything we can to help my dad get through this.
Another member here suggested I start this thread as we have been corresponding through email for months and he thought we should share all of our knowledge and experiences so that others may benefit from it if there is any benefit to be had.
First background- then I will tell you want alternative treatments he is trying....
Dad is 70 years old (he just had his 70th birthday :-)
He was diagnosed with AML M0 on April 7, 2011. We brought him to Dana Farber the very next day where we were told the risks, etc. and he began induction within 2 days. At that point he had 88% blasts.
He flew into remission after induction and we were thrilled. Although he had a number of complications during that time, the team was amazing there and he made it through and went home. Unfortunately he became extremely dehydrated from lack of drinking water and was back in the hospital within 5 days in acute kidney failure. They fixed that too, but again he had a number of complications and was almost unable to go through consolidation.
We whipped him into shape and he finally got consolidation. He again ended up with complications: confusion, high fevers, infection, etc., but he again made it through. On our last day in Boston(we were to go home that afternoon) he had blood work and saw the doc. His counts seemed funny. They did a BM biopsy just to check what was going on.
The next week our worst fears were realized. Dad has relapsed. We couldn't believe it. We were devastated. (all this- for 4 months- for nothing we thought). He was 5 weeks out of consolidation.
He was given 4 choices: induction again, palliative care (which is lose-dose chemo for 1 hr. for 5 days on and then 28 days off and repeat, a clinical trial, or nothing in which case we would call hospice and he would die.)
Dad did not want to go through induction again- it was hard on him. He didn't want a trial because that meant months away from home again. He choose the low-dose chemo at home in NY.
The choices were given to him on 7/27/11 and they said he could wait until after his birthday party 8/7 to start the chemo. He was given anywhere from a few weeks to a few months to live.
Here comes the alternative part ......... while we were sitting on the porch on 7/31/11 a neighbor stopped by to see dad. This neighbor has multiple myeloma. He was given 2 years to live. That was 5 years ago. When he was diagnosed, he did not want to do chemo. He went MD Anderson where he was enrolled in a clinical trial. The trial was for 1 year and was given 8000mg of curcumin a day. When the trial was over he was not cured, but his cancer did not progress. He was at 30% when he went to MD Anderson and that is where he is today. He never stopped taking the curcumin. He says he can tired easily because his counts have stayed low, but that in general he feels fine. That was all dad needed to hear. He wanted to try it.
Dad asked for a list of everything the neighbor was doing. He obliged.
He takes:
1.) 8000mg of curcumin a day (4000 in the morning and 4000 a night). Super Curcumin w/Bioperine Time Release 1000mg-60 Tabs
Here is the website:
http://www.agelesscures.com/index.php?main_page=product_info&cPath=3&products_id=1
We bought another brand (1000 mg with bioperine) to get us by at first from a local health food store, but ordered this one since it is the same curcumin he used in his clinical trial at MD Anderson.
2.) Silver : specifically Sovereign Silver (immune system booster)
Here is the website:
http://www.natural-immunogenics.com/
We bought it in a local health food store though
3.) Ojibwa Tea Liquid 16 oz (473 ml) by NOW -
Here is a website: http://www.betterhealthinternational.com/productDetails.asp?prodID=N4855&utm_source=googlebase&utm_medium=comparsionshopping&CAWELAID=556908777&gclid=CNe7q6GwxaoCFQfBKgodBUU8zg
We also got another version from the health food store (Essiac tea concentrate), but we also ordered this version as it is the one our neighbor takes
In addition to what the neighbor has taken for the past 5 years for his multiple myeloma, I have done research and saw some promise for other therapies for AML.
I found that Japan has done a number of clinical trials for AML using high dose vitamin D3 and high doses vitamin K2. There are different kinds of K2 out there, but Japan uses K2 M-4 (Not the K2 M-7 that we see on every vitamin shelf in the USA) It was a tough time to find K2 M-4 for sale in the US, but I finally did.
Here is the website: http://www.nbihealth.com/p-10-osteo-k.aspx
Dad has asked that we throw everything but the kitchen sink at this (AML). His current chemo doctor told us that he can not condone him taking the supplements, because he has no idea if they will #1. Have any kind of interaction with the chemo and #2. if they will cause the chemo not to work (ie. the supplements and chemo could cancel eachother out).
Dad said he didn't care and that he wants to take it all at the same time. SO- dad has become his own guinea pig.
Here is what dad is taking:
(chemo) - dacogen -- just started 8/8/11 - 1 hr a day for 5 days- then that same regiment is repeated every 28 days)
Supplements:
Totals: (a day) - dad started the supplements on 7/31/11 -
His red and white stayed level at that time, but his platelets went up. He has not needed blood or platelet transfusions since he started the supplements- (blood draws only gave us results from 10 days he had on supplements alone before he started the chemo)- He was getting them (transfusions) every 2 days prior to starting them though.
8000 mg of Super Curcumin w/Bioperine Time Release 1000mg tabs- so 8 pills total for the day
1 teaspoon of Silver
2 tablespoon of Ojibwa Tea Liquid
6 tabs of Osteo-K( 3 with breakfast and 3 with dinner)
4 tabs of 1000mg D3 (so he ends up with 6000mg total for day between straight D3 tabs and what is in the Osteo-K)
How he does it:
Morning: 4000mg of curcumin (IMPORTANT- he can not have food or drink 1 hour before and up to 1 hour after so there is maximum absorption into his blood-according to the neighbor)
-- 1 hour later he takes the rest of his morning pills (other meds for other things- thyroid, etc) and he takes 3 tabs of the osteo-K which has K2 M-4, calcium and D3 in it.
-- He takes an additional 2 tabs of 1000mg of vitamin D3 so we can get higher does of D3(Osteo-K must be taken with food)
Before Lunch:
-- 1 teaspoon of Silver (hold under the tongue for 30 seconds then swallow) - once a day
-- 2 tablespoon of Ojibwa Tea Liquid (swallow once a day)
Dinner: he takes
-- 3 tabs of the osteo-K which has K2 M-4, calcium and D3 in it.
--- He takes an additional 2 1000mg of vitamin D3 (Osteo-K must be taken with food)
--- 1 hour after dinner he has 4000mg of curcumin- he waits an hour- takes his night pills and heads to bed.
SO - he is taking all of these supplements AND the low-dose chemo together at the same time.
I have seen trials with curcumin alone, trials with curcumin with D3, trials with D3 alone, trials with K2 M-4 alone and trials with K2 M-4 and D3 together, but never one with using them all. We have no idea what will happen, but we have high hopes. We have not been able to find a doctor who knows about this or is willing to give the thumbs up as they say they have no knowledge on the subject. MD Anderson has a whole group that deals with supplements and alternative therapies as well as trials, but dad does not want to go to Houston. So here we are trying it ourselves.
I will keep you posted on progress. Dad said if it isn't working - since we will have no way of knowing if chemo or the supplements are not working- we will adjust as we go. If he does well- he will stay on this regiment.
From what I have read- curcumin has killed cancer cells in vitrio and in viro. K2 M-4 and D3 have also done that. They said that they have studies K2 M-4 in vitro and seen some leukemia cells mature into normal cells. Of course these are all trials and the docs here and the FDA will not approve things without tons of research. I welcome people to do their own research and also let me know of there are any other alternatives out there that they have either tried or have heard about. Like I said- we have no way of knowing if this will help, but we will keep you informed on dad's progress.
Another member here suggested I start this thread as we have been corresponding through email for months and he thought we should share all of our knowledge and experiences so that others may benefit from it if there is any benefit to be had.
First background- then I will tell you want alternative treatments he is trying....
Dad is 70 years old (he just had his 70th birthday :-)
He was diagnosed with AML M0 on April 7, 2011. We brought him to Dana Farber the very next day where we were told the risks, etc. and he began induction within 2 days. At that point he had 88% blasts.
He flew into remission after induction and we were thrilled. Although he had a number of complications during that time, the team was amazing there and he made it through and went home. Unfortunately he became extremely dehydrated from lack of drinking water and was back in the hospital within 5 days in acute kidney failure. They fixed that too, but again he had a number of complications and was almost unable to go through consolidation.
We whipped him into shape and he finally got consolidation. He again ended up with complications: confusion, high fevers, infection, etc., but he again made it through. On our last day in Boston(we were to go home that afternoon) he had blood work and saw the doc. His counts seemed funny. They did a BM biopsy just to check what was going on.
The next week our worst fears were realized. Dad has relapsed. We couldn't believe it. We were devastated. (all this- for 4 months- for nothing we thought). He was 5 weeks out of consolidation.
He was given 4 choices: induction again, palliative care (which is lose-dose chemo for 1 hr. for 5 days on and then 28 days off and repeat, a clinical trial, or nothing in which case we would call hospice and he would die.)
Dad did not want to go through induction again- it was hard on him. He didn't want a trial because that meant months away from home again. He choose the low-dose chemo at home in NY.
The choices were given to him on 7/27/11 and they said he could wait until after his birthday party 8/7 to start the chemo. He was given anywhere from a few weeks to a few months to live.
Here comes the alternative part ......... while we were sitting on the porch on 7/31/11 a neighbor stopped by to see dad. This neighbor has multiple myeloma. He was given 2 years to live. That was 5 years ago. When he was diagnosed, he did not want to do chemo. He went MD Anderson where he was enrolled in a clinical trial. The trial was for 1 year and was given 8000mg of curcumin a day. When the trial was over he was not cured, but his cancer did not progress. He was at 30% when he went to MD Anderson and that is where he is today. He never stopped taking the curcumin. He says he can tired easily because his counts have stayed low, but that in general he feels fine. That was all dad needed to hear. He wanted to try it.
Dad asked for a list of everything the neighbor was doing. He obliged.
He takes:
1.) 8000mg of curcumin a day (4000 in the morning and 4000 a night). Super Curcumin w/Bioperine Time Release 1000mg-60 Tabs
Here is the website:
http://www.agelesscures.com/index.php?main_page=product_info&cPath=3&products_id=1
We bought another brand (1000 mg with bioperine) to get us by at first from a local health food store, but ordered this one since it is the same curcumin he used in his clinical trial at MD Anderson.
2.) Silver : specifically Sovereign Silver (immune system booster)
Here is the website:
http://www.natural-immunogenics.com/
We bought it in a local health food store though
3.) Ojibwa Tea Liquid 16 oz (473 ml) by NOW -
Here is a website: http://www.betterhealthinternational.com/productDetails.asp?prodID=N4855&utm_source=googlebase&utm_medium=comparsionshopping&CAWELAID=556908777&gclid=CNe7q6GwxaoCFQfBKgodBUU8zg
We also got another version from the health food store (Essiac tea concentrate), but we also ordered this version as it is the one our neighbor takes
In addition to what the neighbor has taken for the past 5 years for his multiple myeloma, I have done research and saw some promise for other therapies for AML.
I found that Japan has done a number of clinical trials for AML using high dose vitamin D3 and high doses vitamin K2. There are different kinds of K2 out there, but Japan uses K2 M-4 (Not the K2 M-7 that we see on every vitamin shelf in the USA) It was a tough time to find K2 M-4 for sale in the US, but I finally did.
Here is the website: http://www.nbihealth.com/p-10-osteo-k.aspx
Dad has asked that we throw everything but the kitchen sink at this (AML). His current chemo doctor told us that he can not condone him taking the supplements, because he has no idea if they will #1. Have any kind of interaction with the chemo and #2. if they will cause the chemo not to work (ie. the supplements and chemo could cancel eachother out).
Dad said he didn't care and that he wants to take it all at the same time. SO- dad has become his own guinea pig.
Here is what dad is taking:
(chemo) - dacogen -- just started 8/8/11 - 1 hr a day for 5 days- then that same regiment is repeated every 28 days)
Supplements:
Totals: (a day) - dad started the supplements on 7/31/11 -
His red and white stayed level at that time, but his platelets went up. He has not needed blood or platelet transfusions since he started the supplements- (blood draws only gave us results from 10 days he had on supplements alone before he started the chemo)- He was getting them (transfusions) every 2 days prior to starting them though.
8000 mg of Super Curcumin w/Bioperine Time Release 1000mg tabs- so 8 pills total for the day
1 teaspoon of Silver
2 tablespoon of Ojibwa Tea Liquid
6 tabs of Osteo-K( 3 with breakfast and 3 with dinner)
4 tabs of 1000mg D3 (so he ends up with 6000mg total for day between straight D3 tabs and what is in the Osteo-K)
How he does it:
Morning: 4000mg of curcumin (IMPORTANT- he can not have food or drink 1 hour before and up to 1 hour after so there is maximum absorption into his blood-according to the neighbor)
-- 1 hour later he takes the rest of his morning pills (other meds for other things- thyroid, etc) and he takes 3 tabs of the osteo-K which has K2 M-4, calcium and D3 in it.
-- He takes an additional 2 tabs of 1000mg of vitamin D3 so we can get higher does of D3(Osteo-K must be taken with food)
Before Lunch:
-- 1 teaspoon of Silver (hold under the tongue for 30 seconds then swallow) - once a day
-- 2 tablespoon of Ojibwa Tea Liquid (swallow once a day)
Dinner: he takes
-- 3 tabs of the osteo-K which has K2 M-4, calcium and D3 in it.
--- He takes an additional 2 1000mg of vitamin D3 (Osteo-K must be taken with food)
--- 1 hour after dinner he has 4000mg of curcumin- he waits an hour- takes his night pills and heads to bed.
SO - he is taking all of these supplements AND the low-dose chemo together at the same time.
I have seen trials with curcumin alone, trials with curcumin with D3, trials with D3 alone, trials with K2 M-4 alone and trials with K2 M-4 and D3 together, but never one with using them all. We have no idea what will happen, but we have high hopes. We have not been able to find a doctor who knows about this or is willing to give the thumbs up as they say they have no knowledge on the subject. MD Anderson has a whole group that deals with supplements and alternative therapies as well as trials, but dad does not want to go to Houston. So here we are trying it ourselves.
I will keep you posted on progress. Dad said if it isn't working - since we will have no way of knowing if chemo or the supplements are not working- we will adjust as we go. If he does well- he will stay on this regiment.
From what I have read- curcumin has killed cancer cells in vitrio and in viro. K2 M-4 and D3 have also done that. They said that they have studies K2 M-4 in vitro and seen some leukemia cells mature into normal cells. Of course these are all trials and the docs here and the FDA will not approve things without tons of research. I welcome people to do their own research and also let me know of there are any other alternatives out there that they have either tried or have heard about. Like I said- we have no way of knowing if this will help, but we will keep you informed on dad's progress.
My dad has started his first chemo today. of course so far so good, of corse the side effects will only come after his chemo is done. Not to forget the most important part, his blood count, leukemia blast cell im his body and hopefully being able to be in remission with no relapse.
All my best,
Heather
My Dad doesn't really have any serious other medical problems. He does have enlarged prostrate, one mild blockage in heart and a slight bulge in the aortic abdominal aneurism he had repaird about 10 years ago. His oncologist says all of these thing should be on the back burner while we deal with AML.
Dad is back from vacation and had his check up yesterday. His new counts are in and he is still stable.
New counts:
WBC - went back into normal - 9.1 (from 13.2 on 5/15/12)
RBC - went up slightly - 2.82 (from 2.66)
Hemo - went up slightly - 10.1 (from 9.3)
Platelets - went down - 125 (from 154)
The oncologist is still happy with what he sees and so are we. He is a bit tired from his long trip and happy to be home I suspect. As always- we will keep you updated. Keeping you all in our thoughts and prayers.
All my best,
Heather
Can you give me information on how you determined what doses and types of supplements to take? I am in the Chicago area.
Thank you in advance.
My apologies. I am just catching up now. You asked about dosing, etc. When I was reading the clinical trial results it didn't have dosing in mgs. I had to get a chemistry person to help me convert the numbers to mgs. In the multi-center trials in Japan (I think there were 13 hospitals involved, but it may have been 15 or 16) the average dosing was 45mgs a day of MK4. In fact 85% of the 300-400 people in the clinical trilas took 45mgs, however the remaining 15% were on doses from 90mgs to 135mgs of MK4. I choose 90mgs to get dad up to because I read about a man in the trials over there who was the same age as my dad and he had the same subtype of AML and he went into remission after 10 months on MK4 and D3 combined. I started dad on the 45mg standard to see how he tolerated it and within a couple of months pushed him up to 90mgs. (In hindsight, knowing what I know now and how well he tolerated it, I probably would have started off at 90mgs right away)
I have to be honoest, I don't recall exactly where I got the dosing for the D3. I do recall that I read that we could go up to 10,000mgs a day. The only thing I was watching out for was his calcium levels. If they went above 10, I was to back off of the dosing of D3. I did the same with that- started him lower (5 or 6,000mgs a day) and went up and watched how he handled it. When we got to 10,000, he still looked good, so we left him there.
The curcumin dosing we got from the neighbor from the clinical trial he was in for a different cancer. We had no clue if any of this stuff would work at the time, but we just prayed and started it. Dad has been a trooper. He has tolerated all of the supplements well and luckily, things appear to be working. We are approaching a year now (20 days left to make the year) since he relapsed. Docs gave him a few weeks to a few months max last July 20th and today dad will go to his other grandson's high school graduation party :-)
We don't know what the future holds and we continue to monitor everything. Our motto has been if something is not working, we will chnage course and find something that does. For now, he is stable and we feel very lucky.
If I can be of any more assistance, let me know. I'm not a doctor, but I will do my best to keep informing everyone of what we are doing and the outcomes.
My thoughts and prayers are with you and everyone else on this board whose life has been touched by AML.
All my best,
Heather
My apologies. I am just catching up now. You asked about dosing, etc. When I was reading the clinical trial results it didn't have dosing in mgs. I had to get a chemistry person to help me convert the numbers to mgs. In the multi-center trials in Japan (I think there were 13 hospitals involved, but it may have been 15 or 16) the average dosing was 45mgs a day of MK4. In fact 85% of the 300-400 people in the clinical trilas took 45mgs, however the remaining 15% were on doses from 90mgs to 135mgs of MK4. I choose 90mgs to get dad up to because I read about a man in the trials over there who was the same age as my dad and he had the same subtype of AML and he went into remission after 10 months on MK4 and D3 combined. I started dad on the 45mg standard to see how he tolerated it and within a couple of months pushed him up to 90mgs. (In hindsight, knowing what I know now and how well he tolerated it, I probably would have started off at 90mgs right away)
I have to be honoest, I don't recall exactly where I got the dosing for the D3. I do recall that I read that we could go up to 10,000mgs a day. The only thing I was watching out for was his calcium levels. If they went above 10, I was to back off of the dosing of D3. I did the same with that- started him lower (5 or 6,000mgs a day) and went up and watched how he handled it. When we got to 10,000, he still looked good, so we left him there.
The curcumin dosing we got from the neighbor from the clinical trial he was in for a different cancer. We had no clue if any of this stuff would work at the time, but we just prayed and started it. Dad has been a trooper. He has tolerated all of the supplements well and luckily, things appear to be working. We are approaching a year now (20 days left to make the year) since he relapsed. Docs gave him a few weeks to a few months max last July 20th and today dad will go to his other grandson's high school graduation party :-)
We don't know what the future holds and we continue to monitor everything. Our motto has been if something is not working, we will chnage course and find something that does. For now, he is stable and we feel very lucky.
If I can be of any more assistance, let me know. I'm not a doctor, but I will do my best to keep informing everyone of what we are doing and the outcomes.
My thoughts and prayers are with you and everyone else on this board whose life has been touched by AML.
All my best,
Heather
My apologies. I am just catching up now. You asked about dosing, etc. When I was reading the clinical trial results it didn't have dosing in mgs. I had to get a chemistry person to help me convert the numbers to mgs. In the multi-center trials in Japan (I think there were 13 hospitals involved, but it may have been 15 or 16) the average dosing was 45mgs a day of MK4. In fact 85% of the 300-400 people in the clinical trilas took 45mgs, however the remaining 15% were on doses from 90mgs to 135mgs of MK4. I choose 90mgs to get dad up to because I read about a man in the trials over there who was the same age as my dad and he had the same subtype of AML and he went into remission after 10 months on MK4 and D3 combined. I started dad on the 45mg standard to see how he tolerated it and within a couple of months pushed him up to 90mgs. (In hindsight, knowing what I know now and how well he tolerated it, I probably would have started off at 90mgs right away)
I have to be honoest, I don't recall exactly where I got the dosing for the D3. I do recall that I read that we could go up to 10,000mgs a day. The only thing I was watching out for was his calcium levels. If they went above 10, I was to back off of the dosing of D3. I did the same with that- started him lower (5 or 6,000mgs a day) and went up and watched how he handled it. When we got to 10,000, he still looked good, so we left him there.
The curcumin dosing we got from the neighbor from the clinical trial he was in for a different cancer. We had no clue if any of this stuff would work at the time, but we just prayed and started it. Dad has been a trooper. He has tolerated all of the supplements well and luckily, things appear to be working. We are approaching a year now (20 days left to make the year) since he relapsed. Docs gave him a few weeks to a few months max last July 20th and today dad will go to his other grandson's high school graduation party :-)
We don't know what the future holds and we continue to monitor everything. Our motto has been if something is not working, we will chnage course and find something that does. For now, he is stable and we feel very lucky.
If I can be of any more assistance, let me know. I'm not a doctor, but I will do my best to keep informing everyone of what we are doing and the outcomes.
My thoughts and prayers are with you and everyone else on this board whose life has been touched by AML.
All my best,
Heather
Heather,
I am very impressed with the extent of your research and the degree of the details you have provided to us about your father's regimen. I saw the video. He looks great.
I plan on discussing the regimen with my oncologist. What should I be prepared for from him?
Others,
Has anyone of you incorporated into your treatment any part of what Heather is doing for her Dad? If so, what part, and what have been your obsevations of its affect?
Jonathan9