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.
Not sure if this works or not. A friend of my dad's said that it helped to make his blood "better." He ate cottage cheese with flax seed oil. If you google it, you will find several articles. He didn't have cancer but his white count was a little low. He said this helped to normalize his numbers. Again, I have no personal experience with this. Just thought I'd share. Wishing you all good health and lots of love.
Lots of love and good Heath to you also.
Lily
Last May 6,2013
WBC 3.9
Hemoglobin 11.2
Platelets 71
Of course there's lots of claims and counter-claims about these supplements. Of course I'm taking a chance with these, though I'm taking a chance not taking them as well and relying solely on chemotherapy, about which there are lots of claims and counter-claims. We roll the dice no matter what.
I have decided at least for the present not to supplement the chemo with anything -- after about 3.5 years it seems like the chemo must have gotten the mutant stem cell(s) that in my case were causing the AML. I still have MDS, but we are watching it carefully ... after chemo you cannot expect things to get totally back to normal (MDS just means that your cells are mal-shaped). It does not seem to be affecting me.
This thread is extremely useful to those who cannot go thru chemo -- like Heather's dad. You will be doing us and everyone a great service if you continue to document exactly what you are doing, and perhaps let us know where we can get it. My personal interest is in regard to my having a relapse, which at 69 they probably would not want to chemo me again. But in the meantime, I would rather not rock the boat ... for me things are great as is right now.
Thanks -- dave
I'm going in tomorrow for my third round of consolidation chemo. At this time I do not need a transplant since I have the NPM-1 marker.
It has been some time since I posted.
I hope all mothers, whether patients or caregivers, or women who provide nurturing as daughters, sisters, aunts, or friends. had a happy Mothers Day. This past weekend, I had the good fortune of hearing talks by three teenagers about their mothers. Each extolled his or her mothers. One mother was a divorced woman who works outside the home; another a stay-at-home-mom in an intact family; and the third a physician married to another physican. As I listened to the talks, I thought about my parents, how much they had done for me, at times at great sacrifice to themselves and with little appreciation, and at times opposition, from me. Belatedly, I thanked them in my heart and mind. Mothers Day can be a great day for us all.
I am not sure whether I should continue to post under this thread, but it is where I am comfortable since I gave oster-k a real try. It was uncuccessful for me, but I encourage others to try it becasue it has been so successful for Heather's dad and others.
I tried a high dose of osteo-k for three monthe. The manufacturer had said the average time to be effective was 8 weeks and recommended I try it for 10 weeks. After three months it did not seem to be working for me, and I contemplated what to do next. In the meantime, I deveoped sores in my mouth, became short of breath and tired easily, and experienced a thick congestion in my sinuses. In remission, I had been walking two to four miles on most day. Now my walking is confined to what I do while shopping. Because of the sores, eating was no fun and I have lost about 5 pounds.
My wbc rose to the 100 range. The dr became concerned and said if they did not do something, it would begin to affect my breathing and thinking. He put me on Hydrea.
Three weeks ago, I started Dacogen/dicitabine. I take it by infusion for five days, Monday thru Friday. I have three weeks off and will get my next five days starting next Monday. I have my blood tested twice a week. Each week I have needed two units of platelets and two units of red. I go in for another bc later this morning. I am feeling better. The sores are not as troublesome and the congestion is reduced. My wbc is now down to about 10, but I still tire easily and it takes me much linger to do my esercises bc I have to pause frequently to catch my breath.
Last month, nine grand children and thier parents visited in our home for from a few to eights days. This month, I turned 77. Life is good.
I have enjoyed your posts and posive comments. Special prayers and good thouhgt to Ed as his begins his BMT next month.
If there are objections to my continuing to post on this thread, I shall start anoth--perhaps under the heading Dacogen.
Best to all,
Jonathan
I think it is good to post under this thread. Do what is comfortable for you. I like when the older posts become freshened by a new post, it reminds me to look at it.
I am currently on the Decitabine because my 100 day biopsy revealed me being PCR positive. I will have three rounds and then re-do a biopsy.
I also work with a researcher at the University of Penna and will be seeing him soon for any other suggestions.
I will pray for your strength.
Peace,
Andrea
I am sorry the Osteo K has not worked for you. I have been following this thread to keep up on alternative treatments. Right now they have found early relapse on my cytogenics, only 3 months after my bone marrow transplant. So I am on Vidaza, they will check my marrow again in 3 months. I am happy to hear the Dacogen is bringing your WBC's down and your feeling a little better. I also think it is good to keep posting under this thread. Thank you for keeping us updated. I will continue to pray for you and your family.
Take Care,
Suzanne
I believe that between the Japanese trials and the cases that are documented, there is good evidence for osteo-K to be effective. However, there is obviously not one-size-fits-all silver bullet -- if that were so it would probably have been uncovered decades ago. Even the standard treatments do not always work, so it is good that we get this data point -- this is extremely valuable information, and I thank you for bringing it to our attention. I wish you the best of success with dacogen -- we need to know about that as well, so please keep us up on things. We are praying for you as you continue the battle -- dave
I am a big believer in alternative natural methods of healing and was very heartened by Heather's dad's story after 2 years and doing well. I have also researched the supplements that she mentions and was somewhat surprised to see that both Curcumin and the K and D vitamins have a number of clinical trial papers, all of which show very positive and encouraging reports of their effectiveness specifically with AML.
I love my mum, am not a medical person, but I am intelligent enough to know that it is very difficult for alternatives, even those that have been proven to at least have some potential to become mainstream. It is mainly due to financial considerations. I thought it might be interesting to those who are considering something along the lines that Heather suggests that Pharmaceutical companies tried to patent Curcumin in 2001 but the US patent office refused the patent because it had such a long history of beneficial effects already documented. This would tend to suggest that even more traditional medical research was seeking to make Curcumin a financially viable treatment.
I have absolutely no complaints about the efforts the doctors are making to help my mum, but I am being realistic and in the light of her age, I am preparing myself for the fact that they might now have anything particularly encouraging to offer her. I realise that with anything there are no guarantees, but it seems to me from the research I have read and Heather's story that trying something that has been seen to work for some people would be better than just giving in with no alternatives.
I would love to hear others thoughts on this and if Heather is out there any advice you have because my mum is a little older, but is in the same kind of situation as your dad.
Thanks and thanks to everyone who posts on this. It is encouraging.
David
I will keep you and your Mom in my prayers.
June
David -- my take on the alternative treatments is that they are there when the standard stuff just is not going to work. If they make a decision not to go with any more chemo, and perhaps not to try Decitabine, then for sure I will try these supplements. I have not been on them myself because I am still doing fine after three years from my chemo. But chemo will not be an option for me if I relapse, and so I am watching this thread very closely. Please keep us up on how you mother is doing and let us know what you decide. You are a great help in getting all of these cases documented. If it only works 50% of the time, that is not bad for the 50% that it helps. Nothing is 100% sure. We just need to keep trying things and documenting the results. Thanks -- dave
David, I am sorry your mother had the adverse reaction to the standard Induction chemo. When I had it, I was told that age was a factor.
I gave osteo-K a good try for almost 4 months, but it did not seem to work for me. Because of the experience of Heather's dad and others, I nevertheless recommend other try it under appropriate circumstances. I had had 7:3 induction and two rounds of consolidation but relapsed after 6-8 months. I tried Heather's regimen, only in a higher dose suggested by the manufacturer, for about four months.
I am now taking decitabine. The drill is dicitabine Monday thru Friday, every four weeks. On the off weeks, I have blood draws twice a week and transfusions of platelets and red blood as needed--a lot of time at the clinic. I have had two rounds of dicitabine and seem to be better. I am walking farther and seem to tire less easily. I think I may have let the lukemia get a little ahead of me in the four weeks on osteo-K. My doctor has told me the following about decitabine:
1. There is a 25% chance it will work.
2. If it does, the remission will likely be less than the remission after the Induction.
3. I will have to be on the regimen for the rest of my life.
4. He has a patient who has had 60 doses of decitabine and is very happy. At 5 doses every four weeks, I calculate she has been on it for about a year.
5. One of the early indications that it is working is that I will be less transfusion dependent.
6. I am "at tremendous risk of a life-threatening infection."
A person I respect has told me that her research indicated that decitabine eventually kills one's bone marrow. When she confronted the doctor and backed him into a corner, he agreed.
Without any bone marrow, I assume, one is a goner.
With frequent chemo infusions, blood tests, and blood transfusion, travel is difficult. However, I have booked a long-weekend trip next weekend to attend a 50th class renion and to visit family in the DC area. A may miss one blood draw and possible transfusion.
For those interested, I will keep you all posted on my experience with decitabine. By the way, if decitabine does not work, I may go back to osteo-K, Heather's dad had tried decitabine before he switched to osteo-K.
Best to all, especially those about to undergo BMTs.
Jonathan