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.
I am not recommending anything -- I would have nightmares if someone did what I recommended and then had problems. This is a decision that you and your dad have to make based on your life view and the recommendation of your medical team. Get a second and third opinion if at all possible -- no one should mind ... in fact it kind of takes the heat off of them.
My decision was based on my onc telling me that under the conditions that he saw me under at the time, he did not believe that having a transplant would increase my chances of long term survival. So it became a no-brainer ... why go through it for nothing. There is also the GvHD problem and I am fairly certain that we have not had anyone on this discussion group (any of the threads) who had a transplant not state that this was a problem for them to some degree. Ollie is grappling with it now -- be sure to read his recent posts over the past three or four weeks. But on the other hand, there are many who have had a transplat who would gladly do it over again, so there is no definitive answer.
But you have great resources at your disposal and they all want to help. I am sure you will hear from many of them -- dave
Good news about your Dad's remission - a very big step that does open the avenue for other treatments. As Dave mentioned, I was faced with the option of SCT or just chemo last spring, made a little more complicated in that I had a 10/10 match. The decision itself took a couple of months as I went through consolidation, and at the last minute I decided on just chemo figuring at worse case I would make it through the summer, and best case would be like Dave. Had a fantastic summer, fall and early winter until I relapsed again. Made it through induction with normal drug routine - opps, forgot. Turned 71 in February. However I had two major changes from last spring. First, my chances of remaining in remission was cut down to three to six months as a rule of thumb and second, I didn't have long to make the decision as if I went with transplant they wanted to do it as quickly as possible while I was in remission.
I considered going with just chemo again, and when in remission going for the Onc's few research attempts, then to alternative care. I had the pleasure to met Heather's dad and am so impressed with the support and research done by Heather, aided with the strong determination to beat AML that John has. However in spite of Heather's family and success, it is a longshot compared to having a SCT, and again I had that 10/10 match. I had my "quality of life" time, so went with SCT. I had 55 days since transplant and am just beginning to get some GvH on skin, so am happy about that. Treatment is so darn hard for AML as the cancer can differ so much, and the treatment is so hard on our bodies, more so as we get older, that success rates are not the greatests but they are improving. My transplant, a "reduced stem cell transplant," was not around years ago and is still fairly new. And there is a lot of research on GvHD. No matter what happens, I will contribute a little bit to that research.
Ramble on again. It is a hard decision to make. The important thing is once you make a decision, go with it with all your body and soul. No matter what happens, it was the right decision - believe that. Or, on the bright side, twenty years ago we might not have had the opportunity to make that kind of decision. Lastly, most of us have been delt the card of AML - who knows why. Beyond my pay grade. What we need to do is to play the best hand we can with the cards we have been delt.
Keep the faith. Will be praying for you and your family.
Ollie
Dave-what kind of chemo are you doing? How often do you have chemo? Thank you both. I value your thoughts and opinions!
I am not on any chemo now. I know there are some cancers that take continuous chemo -- I have talke to people who are on a rather continuous regimen. In my case I had chemo over the course of about 7 months (June-December, 2009) -- one Vidaza round, that my next onc never wanted to "count" -- two induction rounds and three consolidation rounds. The last one ended in December 2009, and that is why I count my survival from Jan. 1, 2010. I have had no chemo, transfusions or any other medication after that. (Exception -- I am on a thyroid medication that I was on probably almost a decade before being DXed, so that really does not count as any cancer med.) I now go in once every three months for a blood test, but I feel like if I was falling out of remission I would know it. Only lasting effects is that I hit the wall fairly quickly when working outside, especially in hot weather. But I did do some significant chain saw work recently, so hold my own for a man of 68.
I hope this helps -- please keep asking -- dave
PS -- my total knock down drag out story is on my web site -- it goes almost 90 pages. If you are interested it is on http://BibleThought.org/ at the bottom of the home page -- the document is called: "No Visitors Please." -- dbb
i would like to thank you and send my admire and appreciation to your hard effort on your website , putting all your case nearly day by day . its really of a great benefit and i wish you all the best and cue and happiness in your life.
thanks
karim
I have tried discussing this regiment with several oncologists. They let us do it, but don't condone it. Their collective response (from states away on different days could be read in unison) - "I don't know anything about that." I have yet to find an oncologist in the US that knows about these trials or is willing to do some research on their own, however, we continued the path without the blessing of the docs per se.
The result? Dad is still here. I have run into a number of theories from folks who think they know why the doctors are not receptive. I could drive myself crazy with it, but I don't. At the time, when dad started all of this, we didn't have any time. We didn't have time to worry. We didn't have time to see if the doctor cared and try to rectify that, we didn't have time.
Dad was given 3 weeks to a couple of months. I felt confident in all of the research i had done. We were simply out of time, so knowing what we were up against, we pulled the trigger- regardless of what others had to say or not say.
We were flying by the seat of our pants and we knew it, but what choice did we have?
That is fortunately or unfortunately how it went down for us.
We have been blessed and almost a year later-- a year after he was told he had 3 weeks to a couple of months to live - he is till here. Could that change tomorrow? Sure and that scares us, but we continue on course and watch his counts and make adjustments as we go.
It has been difficult to not have an oncologist on board, but what choice did we have? They wouldn't help. The only thing we have gotten out of an oncologist is - (keep doing whatever it is that you are doing- you look great) but when faced to look up the research himself- not interested.
Sorry this is so long winded- I just want you to be prepared. Def. talk it over with the doctors. If you decide to do it- they should know anyway exactly what it is, and dosing etc. They should always know. I just wanted you to not be disappointed if they have a reaction like ours did and are not super supportive.
The research is out there for all too see. The results from the trials in Japan are there. Let me know how it goes.
All my best,
Heather
W- 11.2
R - 3.14
Hemo - 10.8
platelets - 177
As you can see- things look good. :-)
We have opted to go on a maintenance dose moving forward and see how he does.
Dad has been having some kidney issues since the heavy chemo way back in April of 2011. His creatine and BUN have been high. We had one kidney doc who was taking dad in a direction we didn't like, so we got a 2nd opinion. This new doc has been wonderful.
One of the things she requested is that we take dad off of everything he was on so she could get a clean 24 hour urine test to check kidney function without anything clouding things up. We were absolutely panicked. The thought of taking him off the very supplements we were convinced that were helping him live scared the hell out of us. We were scared to death, but obliged just a few weeks back. We got blood tests every single week again to monitor everything. He was off all supplements for 3 weeks. His counts stayed good.
He did his test and the doc has cleared us to start everything again. The thing is, dad is six days from the one year mark since he relapsed. He has been doing well.
The man that I modeled dad's treatment after (a man in Japan who went through the clinical trials and has the same subtype - M0 and was dad's age), went into remission after 10 months on treatment. It was getting to the time that we thought we should back off and see how dad did anyway. Like a lot of the other things we have had to do, it was by force, but dad is doing well. :-)
It is for this reason, that we decided to put him on a maintenance dose of 45 mgs of MK4 and 6000 mgs of D3 and see if we are good. He is back to taking 6 osteo-k pills a day (3 in the morning and 3 at night) He is also taking an additional 4 D3 pills (2 in the morning and 2 at night).
As always- I will keep you all posted on progress. If anything seems funny, we will increase back up to 90mgs of MK4 and add the curcumin back in.
This like everything else will be an experiment, but since it has been 12 months and the guy and Japan started his maintenance dose at 10 months, we feel like it is time.
I will keep you posted.
All my best,
Heather
Well, we do want them to be honest and realistic but sometimes they should not be so definitive and rather give us a series of what-ifs. I feel like they think we will lose confidence in them if we do -- its human nature. I was luck to find an oncologist who was willing to take a chance on me. When I came out clean he was more overjoyed than I was (because I still did not really believe it).
But this is not about me. My advice is consistent with the others on this list ... get a second and third opinion -- as much info as you can. Ask questions -- what if questions -- what will be the downside of a transplant or various other approaches. Typically what has been their intermediate and long term survival rate. If you oncologist does not want to answer such questions (or find out for you), then perhaps you really need to move on to someone who will. If s/he does answer your questions then it becomes a tradeoff.
Be sure to count quality of life issues in with survival. I would rather have one good year than five years of pain and disability. That's me. Ollie factored it in and even though he regressed he is still glad that he had that one really good year. In my case it was easy -- my onc told me that a transplant would not buy me any more years and it was a risk. My thought was -- why go through it if it is not going to buy me anything? Your dad's question might be -- why go through it if it is not going to buy me that much?
There is no right or wrong decision -- what he needs to do is to get all of the factors in front of him -- perhaps write them all down on a sheet of paper -- the pros and cons of each possible action. Get them into his brain and take as long as he needs to digest them. Then sleep on it with the idea that when he gets up the next morning he is going to make the decision and let the chips fall where they may. Once the decision is made, never look back, and continue the fight with whatever life might deal out in the future.
I hope this helps -- dave
Dad had 2 rounds of Dacogen (also called Decitabine) before we stopped all chemo (one is Aug. 2011 and one in Sept 2011). He had it for 1 hour a day for 5 days each time. Prior to that he had one round of 7 and 3 induction (in April 2011) and one round of 5 and 2 for consolidation (in June of 2011). It was 5 weeks after his consolidation round that he relapsed.
He started supplements on or about 7/31/11.
Hope this helps. :-)
Best to you and your dad,
H
It has been exactly ONE YEAR since dad's relapse and he is still here!!! Hooray!!!
This is a huge milestone for us all! Thank you so much for everyone's support throughout this long fight. Since diagnosis in April of 2011 you have been a constant source of strength to us and we can not thank you enough!
All my best to all of you!!! We will continue to keep you updated. Today we celebrate! :-)
Heather