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.
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.
morning. If any one finds a way to listen to a tape or an archived broadcast of the interview, pls
let us know.
First, a response to Eds question about taking osteo-k while in remission as a preventive
measure against relapse. While I was in remission, I began taking a lite version of the osteo-k,
about a third (30 mg) of what Heathers dad is taking. I am not sure when I started, but the
packing slip on my first shipment bears the date of 7/18/12, but I did not start taking the pills as
soon as they arrived. I estimate I began in mid to late September. I also started taking 8,000 mg
of curcumin and 10,000IU of D-3
My blood counts have dropped consistently since 9-1-12. On 1-3-13, a BMB revealed blasts of
10-20%, and my blood were: WBC-1.33; H-7.8; P-98; RBC-2.21 . In talking with the people at
Nbi the next day, one of the doctors recommended I increase my osteo-K to 135 mg, 50% more
than Heathers dad is taking (90 mg). He said that in a study in Japan of 6,000, no one had
experienced any adverse side effect in doses up to that amount. He said that when my blood
counts rose, I could cut back. I have been taking 135 mg since 1-4-13. He also said that, on
average, it takes about six weeks for the osteo-K to take effect. In some, it is longer; in some, it
is less.
On 1-10-13, my blood counts were: WBC- 1.3; H-7.3; P-82; RBC-NA. On 1-11-13, I had two
units of blood.
Thus in my case--an n of 1-- , the result was that a lite dose of osteo-K did not keep me in
remission. I believe Daves approach is to hold off on the alternate treatment as along as one is
in remission and hold the osteo-K in reserve in the event one relapses. Cost can also be a factor
because osteo-K is some what expensive.
I see the dr today and will have another blood count. Last week, we discussed three options: a
blind clinical trial of chemotherapy in the hospital; out-patient chemotherapy with decitabine
(Dacogen); and doing nothing. I said I did not want to go into a hospital at this time (too much to
do right now) and I wanted time to consider the out-patient regimen of 5 days of chemo given at
the clinic every 28 days. My goal is to string out the decision to see what the high dose of osteo-
K will do. The dr says there is no rush but sooner is better not necessarily for the effectiveness of
the treatment but because I will be stronger. I am feeling pretty good and the transfusion made
thing even better. I can see why blood doping was popular among endurance athletes, e. g. Lance
Armstrong.
Best to all,
Jonathan
If it works then you have avoided some major issues; if it does not work then you still have these other alternatives. So, I think you are actiing wisely, but for sure do not go against your medical team -- they certainly want the best for you. I am glad that they are involved with and know about your taking the osteo-K. Thanks so much from all of us -- dave
Dr. Neustadt's Cancer Support Network Interview
Here is the link:
http://www.nbihealth.com/supporting/Neustadt_Cancer_Interview.2013.01.15.mp3
Best,
Heather
Renata Tezner, 59 years old, from Poland talks about her diagnosis with breast cancer, then acute myeloid leukemia (AML) ten years later, how she was given a "death sentence" before her son found Osteo-K. Nutrients in Osteo-K have been shown in basic research and human clinical trials to promote healthy cell division and kill cancer cells in people with myelodysplastic syndrome (MDS), AML and liver cancer.
The YouTube link is: http://youtu.be/vMXWudypvOQ.
It's pretty amazing. Check it out.
Best,
H
http://www.youtube.com/watch?feature=player_embedded&v=vMXWudypvOQ#at=17
Thanks for the reference to the YouTube video by Ms. Tenzer. It was amazing. Her son may have learned of MK4 from your posts and video.
Other Interested Persons,
I have had two blood counts since my last post. In Heather's words, they are still in the gutter. On 1/16/13, They were:
WBC-1.6
Hgb-8.8
Platlets-74
RBC-2.63
ANC-0.6
The RBC and Hgb were likely up bc of the 2 unit of blood I received on 1/10.
Yesterday, 1/31/13, my count were:
WBC-1.09
Hgb-7.9
Platelets-69
RBC-2.33
ANC-0.4
I am still taking the high dose (135 mg) of Osteo-K, aka MK4 and referred to by my sons as Special K. Heather's dad takes 90 mg.
In several conversations with people at the manufacturer of MK4, I have been given some interesting information:
1. Of the 6,000 in Japan who have taken MK4, most are taking it for osteoporosao and liver and other cancers. Only 100 have taken it for AML. The 6,000 is used to show the lack of side-effects.
2. The success rate with AML is 30-50%.
3. The average time to notice an affect is 6 weeks. They suggest that I take it for 10 weeks.
4. As far as they know, there is no problem taking MK4 while getting chemotherapy.
5. The first sign that MK4 is working will be a rise in the platelet count.
6. The people at the manufacture are very willing to talk.
As Heather has pointed out, MK4 has been approved by the FDA for an orphan drug study. The orphan drug program was developed as an incentive to develop drugs to treat diseases with fewer than 200,000 patients at any one time. There is an interesting article in yesterday's Wall Street Journal (1/31/13) about the big business of orphan drugs.
I will keep you posted about how MK4 seems to be working for me.
Does anyone know if Ollie tried MK4? Has anyone else tried it?
I am feeling good, except I have started to get light headed again and my walking speed and endurance are declining. Last week, I did something I had not done in some time--I worked all night, went to bed at 6 a.m., got up at 7, and was out of the house by 8. Last weekend, my wife and I flew Salt Lake City to attend a memorial service for my mother-in-law, who died at 93. An amazing woman--mother of five, grandmother of 41, and great grandmother of 101, and matriarch to them all.
Best to all,
Jonathan
I advised someone whose wife got AML as a result of breast cancer treatment to come over here and consider osteo-K. It looks like the reply 351 above (AL5502) is a patient with a very similar history. There might be hope -- let's all pray. -- dave
Dad got his newest counts this morning. Counts are:
WBC - 12.3
RBC - 3.22
Hemo - 10.9
Platelets - 231
The doctor said he is doing remarkably well. Dad is coming up on his 2 year anniversary since diagnosis. The doc said since he is doing so well, he will not be doing a bone marrow. AND- he said dad can continue to take his K - isn't that nice of him? LOL
Best,
Heather
* Jonathan - I hope something starts picking up soon. How many weeks have you bee on the 135mgs? Also- are you taking the extra vitamin D3 and 8000 mgs a day of curcumin as well?
PS- Ollie did not try MK4.
Your dad's blood counts are terrific. With such good counts on a regular basis, why would the doctor even consider a BMT.
I have been taking 135 mg of K since 1-3-13. With the 135 mg of K, I get 6,000 IU of D-3. In addititon, I am taking another 4,000 in D-3 pills for a total of 10,000 IU per day.
I was regularly taking 4,000 of cucumin twice a day until about two weeks ago. Then I started missing some doses because of carelessness and feeling I did not have a empty stomach. I will have to be more diligent.
Jonathan
This is my first post, and I'm new to the world of AML. My father was just diagnosed on January 23rd. He is getting the full results of his bone marrow sample this wednesday Feb. 6, via his doctor at Princess Margaret Hospital in toronto - and then we'll learn what their recommendations are for him. He is 73, and they have warned that they may not recommend chemotherapy, so we are very very anxious to hear the news and what's next. He is a strong, healthy guy in all other ways, but because of his age, they may not want to give him chemo. The other aggravating thing about all of this, is that if they do recommend chemo, he'll go on a 2 week waiting list to get it, which is ridiculous given the nature of AML.
So, here I am researching alternatives. I read all about Heather and her dad's story, and I've ordered Osteo-K, but am trying to figure out the vitamin D3 dosage. So, Heather, I can only find 1000I IU tabs of D3, which equals .025 mg per tablet. Where do you get 1000mg tablets, and are there dangers that you've read about associated with such high levels of vitamin D3?
We are also giving him dandelion root tea - based on this research:
http://www.cbc.ca/news/canada/windsor/story/2012/02/16/wdr-dandelion-tea-cancer-killer.html
But, we still aren't sure what dosage would be best. I have written to the doctors doing the trials to see what they are doing, but no word yet.
We have started him on Curcumin and essiac tea as well, and are feeding him lots of amazing food, including 6 oz of wheatgrass juice per day.
It's early days, since we don't even know what subset he has yet, but we can't just sit around and wait doing nothing.
Best,
Marion
Welcome to this site. I am sure you will find very useful support and information. Please keep us posted on what is recommended for your father so we can provide our imput.
I believe that Heather is referring to 1,000 IU of D-3 and not 1,000 mgs.
Thanks for the cite to dandelion tea.
Best regards,
Jonathan
marion
We are all here to support you and your Dad. Any questions you have are usually able to get a thoughtful and as informed as possible answer.
Ed