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.
Let's start with the machine. No down side. Keep using it. But cancer is just not as simple as this -- we all wish that it was. I am not a medical doctor -- I am 69 and a three year, three month survivor of AML/MDS with chemo only. I had full blown AML and the chemo was intensive, and I feel like I only survived by the grace of God and my previous good health. I am not trying to push any treatment -- am very interested in all of these experiments since I could relapse at any time, so want to know what works ... as we all do and as all the meds do.
It is hard for me to say that vidaza is not a chemo -- I was on it for a week (one round) out patient before getting into my more intensive treatment in a hospital. I have read that it is about the only thing that can deal with MDS, and it works about 50% of the time. Not bad ... certainly better than nothing. I would expect dacogen is about the same effectiveness, since it is given rather than dacogen to some patients. I do not know what the criteria is. I do know that my onc said if I relapsed they would try one or the other of these, but that it has not proved to be effective on relapse patients, only on pre-AML MDS or perhaps the lighter cases of AML, since the differentiation between them seems rather arbitrary over the possible continuum of blast percentages.
When on vidaza I had to get blood and platelet transfusions, which tells me that it was killing much more than the blasts. I believe it is a chemo and works pretty much like the other chemos but perhaps just not as brutal. So for older patients there might not be any standard treatment.
You have read about osteo-K. If your oncs will let you experiment with it while on the other treatments, that might be an option -- I believe some on this thread have taken that approach. However, it looks like Arsyl might not have the Vidaza option, so it would seem his best bet would be to get on the osteo-K and keep a close eye on the blood numbers.
I hope cliff gets on here and maybe runs thru where he thinks I might not be on target. I know this is not a solution, but what I am trying to do is to just help you think it through. In tough decisionis like this, you only have so many alternatives. What you need to do is to list them out. Like, for example, Vidaza, osteo-K, both V and o. Three alternatives. The weigh the pros and cons of each -- might be cost, might be downside to older people who cannot handle certain things, might be potential for remission. Usually when you list out the alternatives and then talk to your med team about thim, it falls out fairly easily the best course of action.
I beg both of you to stay on this list and give us frequent updates as to what you decide, what you are taking, and how you are doing. There is, as you can see, a wealth of information being generated here. Please help us to add you case history to this information -- no telling how many people you might save in the future. -- dave
WBC--1.11, up an insignificant 0.02 from two weeks earlier.
Platelets--69, same as two weeks earlier.
Hmg--6.7, down from 7.9 two weeks earlier and from 7.8 six weeks earlier when as BMB showed blasts between 10-20%. I received two units of red blood about a month ago.
RBC--2.00, down from 2.33 two weeks earlier and from 2.21 at the time of the BMB.
After the the results of the blood draw, I was given two units of red blood. The dr said I should have a standing order for blood any time my Hmg is below 9.
Let me repeat some of what one of the MK4 people has told me.
1. The average time for MK4 to have an effect is six weeks, for some longer, for some shorter. He recommended I stay on it for ten weeks. I have been on it seven plus weeks. Also, at his suggestion, I am taking an extra high dose--135 mg per day, opposed to the 90 mg which Heather's dad takes. I also take 10,000 IU of D-3, some of which come with the MK4, and 8,000 of curcumin.
2. The first sign that MK4 is having an effect will be in the platelets. I take some hope from the fact that neither the platelets nor the WBC dropped in the last bc.
Subjective symptoms. Night sweats have been more frequent and profuse. The last two nights have have had to change my night clothing in the middle of the night, I experienced night sweats to varying degrees in the year before my initial dx, but not in the last few months before dx. I am get out-of-breath when walking or doing things around the house. Stamina is definitely down. I attribute it to the low RBC and Hmg. It irks me to be going down a slope I went through so much to climb.
I have another blood draw this week and will see my onc. Depending on my counts, I may raise the subject of a 5/28 regimen of Dacogen. I will have been eight weeks on the high dose of MK4. I have set ten weeks as the trip point when I will consider traditional chemo if the MK4 does not seem to be working.
Best to all,
Jonathan
Children and grandchildren are a blessing from the Lord, and I have been richly blessed. Life is good. Blessings to you all.
Jonathan
Vidaza is chemo. MDS is a cancer, and cancers are treated with chemo. Chemo drugs differ in many ways. Some are much stronger than others and side effects are not the same.
There is no way to predict how your father will respond to Vidaza. Yes, it is not a cure for MDS but it can reduce or eliminate the number of transfusions that he gets and considerably prolong his life.
Most cancer patients are not young and have multiple health issues. Your father's medical history should not be the reason to decline chemo treatment. And side effects usually can be managed, as your doctor told you. My father in law got diagnosis of MDS that, believe it or not, was later found to be a mistake (pathologist misread the biopsy). He got several cycles of Vidaza and side effects were very mild. It really helped with his blood counts even though the diagnosis was wrong.
I understand all the difficulties and expense involved in getting this treatment for your Dad. It comes to this: with Vidaza he has a chance to survive longer. Without it his MDS will inevitably progress to full blown AML and he will not live very long. You need to discuss it as a family and you should definitely involve your father in this discussion. I am sorry you have to deal with this. I wish both you and your father the best.
Tanya
Heather, can't wait to see the new video update on your dad! Very kind of him to offer chats to anyone who wants to talk. What a wonderful resource.
Sandra and Ben, thanks for your thoughts and encouragement around Vidaza - dad is tolerating it well, and is so far okay with the treatment.
His levels did go down after his first round of vidaza, but we expected that (this is supposed to happen for the first two rounds), and they actually didn't dive as much as we thought they would. One week after his first round of vidaza his blood worked showed that his platelets were almost cut in half - from 124 to 66, but a test today showed they were up a bit. Maybe the osteo-k is starting to work (fingers crossed)...though he's only been on it for under 2 weeks.
He is having a blood transfusion today by choice - they said his hemoglobin is sort of borderline, and gave him the option, and he went for it because he's been feeling a bit woozy.
So, that's all so far. He is in pretty good spirits and is taking good care of himself. Exercising a bit, eating well, taking his supplements, napping when he needs to. We're plugging along with a lot of hope.
All the best to everyone,
marion
A long time since I made a post. My dad is still in remission and continues with Vidaza. He is in the 9th cycle. Since he is doing so great (red great, white great and plateletes around 85000. But because of his MLS he has never had more than that) the doctors recommended a BM trasplant. We have been searching for a match but only a 9/10 match was found. The doctor says this increases risk of getting a GVHD.
Today the doctor said we should get another opinion. The BM Biopsy showed the Vidaza is working and the chromosomes also had changed to a normal ones. He calls this a miracle.
We dont know what to do now since there is always the possibility of a relapse.
I live in Mexico and my dad had MLS. In March 2012 the diseased turned into a AML. He had one round of chemotherapy but due to pneumonia he was given 12 hours and in an induced coma for 10 days. Because of that the doctor said he wouldnt give him more chemotherapy. Thanks God that only round got him into remission.
Since June he is taking Vidaza. And he has got wonderful results. In two months he got around 200 transfusions and since August he is got none. But the doctor advised us that because of the MLS the Leukemia will return sooner or later (he said before a year).
We were waiting for a transplant but havent found a perfect match. Another doctor said that we shouldnt take the risk of the transplant since my dad is doing so great. The last BM biopsy showed no signs of the disease and also the chromosomes (he had the medium risk ones) have become normal. But we are always afraid of a relapse.
We have been to the MD Anderson in Texas and we will be taking another opinion at the Methodist.
I wish the very best to everyone
OK -- bottom line; I am your dad -- they would not do a BMT or as SCT on me unless I relapsed. That is how I am playing it with my own life. So, I go with the doc that says to take the wait and see. The BMT or SCT is not foolproof -- he could still relapse after that, and the risk of GvHD, while not typically fatal, is (I would guess from what I have seen) at least 90%. Please do not base any decision on what I say -- I would never be able to live with myself if I knew you did that and things went bad. All I am saying is when you weigh the quality of life, the fallback position if something does go wrong, and the possibility of his living out his life without a relapse, I would seriously consider taking the wait and see approach. I am glad that one of your doctors proposed it so it is not just my idea.
Make a list of the pros and cons of all alternatives that are available to you. I think the right decision for your dad will fall out easily once you do that. Be sure to go over the list with all the oncs on your medical team. We are praying for yhour dad and you -- keep yourself healthy. -- dave
Well, a dificult decision to take. We have an appointment on Tuesday with the doctor to discuss our options. Ill keep you posted.
Just want to mention that for us, Vidaza has been working great.
Have a good night.
Here's the link : http://tinyurl.com/bbab844
He continues to do very well and we couldn't be more pleased.
Here's hoping we will be doing another next year! :-)
Best,
H
I also uploaded a couple of clips to YouTube from the same day we did the interview. Dad is such a ham- I thought I' share those as well :-)
http://youtu.be/r-8dQYGtxlw
http://youtu.be/k69EvpwI8zw
I am just so thrilled to see your dad looking so well. He looks better every time we see him! It's very gracious of your dad to take the time to take peoples calls. We thank you for your updates and pray these alternative treatments will give hope and healing to leukemia patients.
You are a true blessing,
Sandra.
April 2011 to March 2013! 2 years! 2 marvelous years.
Bravo.
Thanks to you and your dad for making and posting the video. He looks and sounds great, and you sound very happy as I am sure you are. His numbers are indeed impressive and motivating.
Best to you both,
Jonathan