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.
deleted_user
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.
I'm very happy about your Dad's recovery!
Now, my daughter has a relapse of aml, it started about 6 month ago.
She has platelets 4 ( before the tansfusion she had today).
They are giving her glivec at the moment, which works, but they are afraid of a new mutations.
I want to follow your lead and and give her supluments from your list,
already got them.
She is concerned about the possibility of internal bleeding because of a low platelets.
Don't know what to do....
Best regards,
Alex
Just to clarify, I am asking whether it is safe to take curcumin when someone has only 4 platelets since curcumin itself is an anticoagulant. Also, since K2 is a blood thiner, is it also too risky to take it for someone with 4 platelets?
Thanks!
Alex
I am so sorry you and your daughter are going through this. Unfortunately I am not familiar with glivec, but I can tell you our experiences with the supplements.
I have had this question a few times. Although I am not a doctor, I have not seen anything in my research to indicate an issue with taking curcumin with low platelets. in fact, my father's platelets were 4 when I started him on the supplements which included curcumin, MK4 (osteo-k) and vitamin D3. Dad's platelets actually rose after starting him on the supplements. Before the supplements, he needed both red blood and platelet transfusions, once he started them he didn't need transfusions anymore (except for the 2 rounds of chemo he had- then his counts were knocked down again to transfusion levels). After the recoveries from each round, he no longer needed transfusions.
As far as the vitamin K (specifically MK4) - the only issue I know of is that you can not take it with Coumadin (Warfarin). Other than that I do not know of any other reactions. Again, dad started taking it when his platelets were 4 and his counts rose every week. They are now 163.
I have seen similar responses from others who have taken the supplements.
Keep us updated on how she is doing. You will be in our thoughts and prayers.
All my best,
Heather
Are you sure your daughter has AML? Gleevec is usually given in CML-chronic myelogenous leukemia. Usually relapse of acute or chronic leukemia in younger patients is treated with bone marrow transplantation. Did her doctors mention this to you?
I love happy reports! :-)
He got his new counts yesterday:
WBC - 8.8
RBC - 2.97
hemo 10.4
platelets - 163
Dad's oncologist said, "You are doing amazingly well. Since you have been stable for over a year, why don't you start coming in every 2 months instead of every month?"
Dad said thanks, but no thanks :-) We all agree that we want dad to continue to be monitored every month - just in case something changes, we want to get on it as quickly as possible.
With that said- dad is clearly doing great! He went down to NYC and back in the car on Sunday (6 hours of driving) and he spent several hours down there. He continues to be very active.
Dad has hit another milestone! - Dad has officially hit the 1 year mark since his last red blood transfusion! The last time he had a transfusion was the day after Thanksgiving in 2011.
SO- just the facts:
AML relapse - 7/20/11
Started supplements - 7/31/11
Last round of chemo (dacogen) (he had 2 rounds) ended - 9/16/11
Last blood transfusion - 11/25/11
Dad has taken the supplements since 7/31/11. He only stopped for about 6 weeks during the summer of 2012 for some kidney testing. He resumed them and we have no intention of stopping again unless things change in some way.
Reminder of what he takes (I know there are a ton of entries to sift through so I will periodically put this in my updates)
What dad takes currently:
12 tabs of Osteo-K (6 with breakfast and 6 with dinner) -(for a total of 90mgs of MK4 a day)
6 tabs of 1000mg D3 (so he ends up with 10,000mg total for day between straight D3 tabs and what is in the Osteo-K)
8000 mg of Super Curcumin w/Bioperine Time Release 1000mg tabs - (4 pills 1 hour before breakfast and 4 pills right before bed every night)
1 teaspoon of Silver (before lunch)
3 tablespoons of Ojibwa Tea Liquid (before lunch)
NOTE: We have ordered the new osteo-K minis (http://nbihealth.com/p-50-osteo-k-minis.aspx) which we will replace his current osteo-K with when his bottles are empty. The dosing will be slightly different when we start the minis. He will take a total of 8 a day ( 4 with breakfast and 4 with dinner to give a total of 90mgs of MK4 for the day)
NOTE; these are updated totals- if you are reading different dosing anywhere else on this blog- it was at a different point and we kept upping dosing until we got where we wanted to be. This is the current list and it is accurate.
I hope this helps answer any questions people have been having about dosing or timelines.
As you can imagine- we are pretty pscyhed about what the doc said on Monday. It is a reminder of how far we have come. You have all been here since the start and I thank you. Our family could not have gotten through any of this without you. A special thank you to Dave and Ollie who have been rocks for us to lean on throughout.
As always- we know things can change, so I do not want to get complacent. I won't, but I did want to take a moment here to rejoice and be thankful for where dad is at today. It has been such a long road and today it was a blessing to look back and see how far we have come.
All my best to all,
Heather
Please keep us up on everything -- you are a pioneer! -- dave
You are 100% right as usual.
Cliff
my daughter has AML with philadelphia gene. They are considering a bone marrow transplant but so far have not found a match. We would love to be able to control the leukemia naturally though if possible. By the way, a found another forum where a man with CML is using curcumin along with a small dose of Sprycel to control his cancer.
Thanks Heather and everyone else for your replies!
Alex
--Gloria
Thank you for the update on your father's condition and what he is taking. It is nice to get periodic information on both. I am pleased and impressed at how well for father is doing, I am confident his condition is due in large part to your attention to him and his treatment. You are a happy combination of CEO, Director of Research, Case Manager. Care Provider, and Loving Daughter. It is a pleasure to know you, if only through this site.
As you pointed out, the "sifting" can be tedious. I have printed out some of your entries for easy access. I believe I now understand exactly what your dad is taking. At one point, I was a little confused.
Dave,
In response to your request that people using Heather's regimen identify themselves so we can have information for our own "trial," I will do what I can. However, I point out that Heather is the gold standard and that I have no authority for dong what I am. I am taking a lower dose than that taken by Heather's father, hoping it will be sufficient to stave off a relapse. I am prepared to go full throttle in the event of a relapse. I am taking:
4 tabs of osteo-K (2 with breakfast and two with dinner.)
2 tabs of 1,000 IUs of D-3 (1 with breakfast and 1 with dinner.)
3000 mg of SuperCurcumin (!,500 at least an hour before breakfast and 1,500 before bed.)
I am taking neither the silver nor the Ojibwa tea. I do try to drink a cup of decafinated green tea each day.
As you can see, I am at roughly one-third of Heather's dosage.
All my blood counts have been declining slowly and are lower than those of Heather's dad and below the normal range. I completed my second of two rounds of consolidation about six months ago. A BMB about two months ago showed "no excessive blasts."
As for activity, I walk briskly 3-4 miles about 4 days/week, stretch about every day, and lift very light weights almost every other day. Twice in the last two weeks, I have jumped rope for ten sets of 100, some fast and some slow, some without a miss, but I do have to rest between sets to catch my breath longer than I did before my dx.
Last weekend my wife and I drove seven hours to and from Phoenix to attend a funeral. I did a little more than half the driving. Last month we flew to Chicago for four days for an annual meeting of an organization I belong to. No one who was unfamiliar with my condition was able to tell anything was wrong with my health. Of course, how much can a person tell when your are just sitting, eating and schmoozing, Wednesday, I will leave for the airport at 5 a.m., fly to Salt Lake City to attend the wedding of a nephew and related activiies, and return home at about 9 p.m. I acticipate no problems, other than being cold I believe I become short of breath after exertion, such as walking up stairs and loading and unloading luggage, a little sooner than I did two months ago. I attribute this to low hemoglobin and RBC.
I am interested in what others are doing with osteo K and their experiences.
Best regards to you all,
Jonathan
I second Jon on his comments. You wear an amazing number of hats.Your father is fortunate to have you for his daughter. The informaiton you have provided has been of enormous help to so many. Documenting your father's case here with such detail is invaluable.
Jon,
I have to add that I am amazed at your activity level! As I said in an earlier post, it was so good to know that you were doing so well. Your activity level gave me a better view of just how well you are doing! You've inspired me!!
Again, always good to hear from you both.
Therese
Thanks so much for getting back to us and I first want to say AMEN to Therese's statments to both you and Heather -- keeping things documented on this list is currently and will be in the future, a major help to a lot of people.
You are the first, I believe, to use osteo K as a preventative measure. In Heather's dad's situation and I feel the others who have gotten on it, it was after a relapse. In this regard it is probably good that you are not taking the full dosage. I am not expert on this -- perhaps Cliff can help me here -- but my understanding is that the osteo K targets and kills blasts. I could be wrong, but a certain percentage of blasts (something under 5%) are normal in that they are just baby blood cells that will grow into normal blood cells. Leukemia (a mutation in these cells) prevents them from "growing up" and becoming productive. The net result is that they crowd out and eventually eliminate all of the good blood cells, and, of course, that is what we are trying to prevent by essentially chemoing them and then re-booting the bone marrow (or in the case of a transplant, replacing it with leukemia free bone marrow).
In theory -- if I am thinking right ... Cliff, please check me on this ... if you are in remission and normal, the osteo K could be killing off your good blasts and this could account for some of your low blood counts. It is certainly not as simple as I am explaining it, but this is the best my simple non-medical mind can do. If Cliff does not check this shortly, I will uncork his bottle and get him to emerge. Take care -- dave