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.
It sounds like tashka knows a lot more about CML than I do. My dad, who has AML, did take supplements with his chemo though. He stopped chemo on 9/16/11. He took supplements starting on 7/31/11- all through his first round of dacogen chemo starting on 8/8/11. He took IV chemo 1 hour a day for 5 days. He did his second round of dacogen chemo around 9/12/11. That also lasted 1 hour a day for 5 days via IV. He took supplements every day the whole time and beyond.
We waited and were to do another round of chemo, but the IV chemo knocks your blood counts down really low. His were taking longer and longer to come back. The doctor didn't want to do another round of chemo until his counts returned to a certain point. When that wasn't happening, we said no more. Chemo was supposed to be a round every 28 days. Dad was at week 6 or 7 and his counts were still too low to start another round of chemo.
We told the doctor that we didn't want to do any more chemo, even if his counts recovered enough to do one. It was at that point that I upped his MK4 to 90mgs a day and his D3 to 10,000 mgs a day. His counts recovered in 1-2 weeks and we haven't done any chemo since. He just took 8000mgs of curcumin, 90mgs of MK4 and 10,000mgs of D3 a day with some other supplements every single day from that day in Oct. of 2011 on.
If your doctor is okay with the supplements being added to your mom's treatment, maybe you could try it. I can't tell you what to do because I am not a doctor. Everything I did with my dad was trial by fire. We were in big trouble without much time so we worked together, implemented a plan and prayed. He did take supplements all throughout his last 2 rounds of chemo though.
It's a difficult choice to stop chemo. If her chemo is working, I probably wouldn't. Dad's was causing his counts to remain dangerously low (wearing surgical masks and gloves) low. We waited for things to get better and when they didn't, we chose to take action. Luckily, we seemed to have made a good choice, but at the time we had no way of knowing what would/could happen.
It's a crap shoot. You and your mother need to decide what you both think is best together. Both of you have to be okay with the potential outcomes of your decisions too. My family fully backed our decision to stop chemo, but our situation was different.
If you mom's doctor thinks the gleevac is working, find out what that means. Why does he think it is working? What would her counts be like without it? What indication does he have that is working? What does think about her BNP number going up so much?, etc. Ask tons of questions. There were times I am certain my dad's docs felt backed into a corner, but I wanted answers so I pushed until I got them.
Your mom is 91. Ask him how long someone can live with CML? AML can kill within days- weeks. I think people can live with CML a lot longer. I am just not sure. If the gleevac seems to be doing more harm than good, your doc should be able to tell you that. Doctors don't support supplements in general though and I'd think it a safe bet that the doc would rather see gleevac as the main approach than 3 supplements. I am not sure anyone would have an answer to which one if either are going to work.
If the doc is willing and chemo would still be an option in the future, maybe you could try giving the supplements a try under the doc's supervision for a pre-determined amount of time 4 weeks-a few months - whatever the doc says you can try and if no results are seen, go back on the gleevac. I don't know how aggressive CML is and if it would allow for a chemo break like that. Typically AML is so aggressive that you wouldn't nec. have that amount of time to test it out.
We were in a position that we were running out of options and I did finally get the doc to admit that if dad stayed on dacogen it would eventually kill him. It could be a couple of months, it could be a year, but it would have killed him eventually, so we stopped and gave our plan a shot. We figured if we failed that we could always opt for another round of chemo while we tried to figure something else out.
I know this is a tough decision, but it is a decision that only you and your mom can make. Talk with the doctor. Let me know how things go.
All my best to you both,
Heather
Gleevec is a good medication, not without side effects, but very good. It turns off the mutation that causes CML. It is a temporary effect, eventually Gleevec stops working, but while it does patients usually have good quality of life and WBC close to normal. Right now we can only dream about such drug for AML-oral chemo that can turn off the mutation causing stem cell to become leukemic.
Nimo, please approach all this with caution and talk to your mother's doctor. As Heather recommends, ask a lot of questions before making a decision that is very serious.
I don't want to steer you wrong, but I did want to let you know that dad's platelets were 4 when I started him on 8000mgs of curcumin.
He was on curcumin, Ojibwa Tea Liquid, and silver for 10 days at the start and his platelets rose quite a bit during those 10 days. Then he got a round of chemo and everything went down. He stayed on his supplements throughout though.
This from my original post way back last year:
(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. )
Dave is right- ultimately I have no way of knowing what exactly is working within dad's body but if my research and previous outcomes of other patients are anything to go by, I think the heavy hitters in the game are MK4, D3 and curcumin.
I hope your husband gets better. Please keep us updated on his progress.
All my best to you both,
H
Lynet and Tashka-I visited with someone from Chicago who went to the National Cancer Treatment Center of America to be treated for cancer and when her platelets were low they told her to take phosphorus pellets that can be found at most healthfood stores as well as massage organic cold press sesame oil on feet. We have been doing this with dad as well as using Heathers regimen with my dad and other non traditional herbs and body massaging. From the start (Nov 2010) of all this, he has taken some sort of natural supplements. He has really not felt bad or has had any problems of any sort.
Dad has not had any nose bleeds or anything. His platelets were down to 4 back in July of last year right before he started the curcumin. he did not have a bleed though.
TLwebb,
That is awesome! Tell him there are clinical trial records from multi-center trials in Japan too. I am sure he could get those records if he tried. They used MK4 and D3 over a couple of year and a few hundred patients. Let me know what he says.
All my best,
Heather
My father's doctor is also at KU Med and I will be very interested in finding out about the study on Osteo K despite the fact that my father (who is 81) is only taking supportive treatments, i.e. red blood cell transfusions as well as platelet transfusions. They have told us that due to his age he isn't a good candidate for chemo. I keep reading about all of these people in this support group who are doing well on all of these alternative treatments and wonder if we are making a mistake by at least not trying the lesser chemo option. My dads counts are very low (wbc 1.0; hemoglobin 11.1; platelets 13) and he is very emotional and getting weaker by the day. We see Dr Flanagan on Wednesday for his checkup and I would like to ask him again about chemo. What doctor is your Dad seeing at KU? Tamy
A delayed report on my visit with my oncologist last week and my conversation with him about the regimen you have devepoped for your dad.
I told him I had read about a treatment which involved taking large doses of a special form of Vitamin K, vitamin D-3, and curcumin. I said curcumin was being used in studies at Anderson and that vitamin K has been used in trials in Japan for 10 years with positive results. I said that the way I saw it was that I had three options: I could adopt the full regimen; I could adopt a lite version and go full-throtle if the desease came back; or I could hold off and consider it as an option if I relapsed.
Without asking for more information, he said I could try it if I wanted. He then added, "Why don't try it. Americans like to be in control." He is an American, but his heritage is eastern European and he had just returned from a family vacation in ancestoral homeland. I believe he goes there almost every year. He then said, "Why would you want to do it. You're cured." I hope that is the case and am acting as if that is. However, it seems that it is too early to say that for sure. I had induction in January and two round of consolidation --one in April and one in June. I am feeling well and am active, although, as others have related is their experience, I hit the wall early and enjoy a mid-day nap. We scheduled a BMB at the end of the month. The doctor said my blood counts are good.
His final comment, and perhaps his only serious one, was that, in general, he was opposed to high doses of vitamins, especially the fat soluable ones, such as A, C and D. He was concerned they would go into the fat and you could not get them out. I am not sure what he meant by that.
He also said he might be interested in a trial using Dacogen and another drug. I said I had heard of dacogen He also raised the possibility of a bone marrow transplant and said he is doing it with two patients in their seventies. (Like Ollie, I want to postpone a BMT as long as possible.) He showed no interset in looking further into your regimen. I will do what I can to bring it up again at the BMB.
I think I will try Heather lite. I have been taking 1000 of curcumin for about two weeks. I will add in 1000 of Osteo K and D-3 and see how it goes and will keep you posted.
Ollie,
I am pleased you are doing well. As for your skin, a nurse practioner with my doctor suggested, when I complained about a itching on my chest when I was out of the hospital, an equal mixture of Cortizone 10 Plus and Benadryl Itch Stopping Cream. Both are availble in drugstores without a prescriotion. I found the mixture worked better than the ointments given me in the hospital.
Best to all,
Joanthan
Jonathan9 -- think through what you are doing. You are in about the same situation I was a couple years ago. If you fall out of remission there are a number of options that you can try at that point -- and who knows, the state of the art will surely be advanced by then, so there might even be something new. Your body has been under major attack with the chemo. My feeling was that I really did not want to threaten it with any other possible upsets ... all this stuff going in ultimately has to be processed by the liver and kidneys and who knows what the chemo did to them. My decision (and one recommended by my onc) was to leave well enough alone ... "if it ain't broke, don't fix it" is what they say in the business world. But please keep us up on whatever you decide. You are helping all of us out. -- dave