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.
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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.
http://www.mayoclinic.com/health/curcumin/AN01741
Was also interested that 41's dad did run it by their regular doctor to see if it had bad affects, and that he also didn't turn his back on traditional medicine as he was going ahead with this chemo.
41, keep us updated on your Dad's condition and any other information you might find on curcumin. God bless you for coming forward with your post, and know we will pray for your Dad.
Ollie
Things are looking promising. It is till very very very early, but his counts rose twice this past week. He still has not needed transfusions.
He just finished his first 5 days of the Dacogen and his platelets rose from 55 to 95 and his white rose from 7.1 to 9.6 in a weeks time. His red is holding steady although it did come up from 3.09 to 3.20. (all his counts had been dropping since he came home except for when he would get little bursts from transfusions which would quickly go away in a couple of days) So things appear to be moving in a positive direction, but again it has only been 14 days on the supplements and 5 days ending yesterday of the Dacogen.
He has another cbc on Monday so I will let you know.
I hope this helps -- dave
First- I am happy to report that he is still kicking :-) He went though the 1st round of dacogen without much excitement. His numbers dropped as expected, however just when they started going up, they dropped again. This was found on the day he was to start round 2 of the dacogen.
The doc was concerned, as were we, thinking we were losing the fight. We all decided to give it another week and re-assess. The next week all of his numbers started heading up again, so he got round 2 which ended last friday.
He is still on all of his supplements. He says he still feels pretty good- about as good as he did when we left Dana Farber for the last time at the end of July. He has put on 10lbs since he has been home. He is working on putting weight on and walking and we are fishing around for what could be done next if this does not work. However- he seems pretty good. His white count bottomed at 2.1, and is now back up to 4.6. Red bottomed at 2.01 and is now 2.2 and platelets bottomed at 15 and are now 29.
He only needed one blood transfusion since we started the chemo/supplement routine and that was 2 weeks ago. The doc thinks we should have a better indication of how well this route is going in about 3-4 weeks. Thank you to everyone for their support. I will keep you updated. As always my thoughts are always with you and your loved ones as well.
All my best, Heather
Is dacogen the fairly standard chemo? Things sound fairly positive for your dad. Expect setbacks -- the road is rough. For sure keep him from all unnecessary people and don't let him touch anything that has not been sterilized or wiped down. If we can help with addressing the side effects, please let us know. Take care -- dave
I do want to respectively voice my counter opinion for anyone considering turning this disease over to an ancient Indian herb recipe, or saying that they can cure things better than chemo and a BMT.
I was approached by dozens of people who in the goodness of their heart really wanted to save me. They actually got mad when I wouldn't subscribe to their juice mix, vitamin, mineral, herb compliments. I wondered why they were tying to boost my immune system while my doctor was drying to wipe out my cells. So I asked. During chemo they kill all your bone marrow cells hoping they'll grow back without the defect causing AML. If you pump yourself full of these home remedies, you could be working against the chemo.
Putting conspiracy theories aside, why are teaching hospitals and scientists and bio-tech engineers working on finding a cure, when it's as simple as downing some herbs? If these cures worked, surely someone would have broke the silence and announced on CNN that we're all being fooled by the drug companies.
Just as that one 85 year old smoker can say "see, I never got cancer", a certain number of people are going to live without chemo. I drank a guys home remedy juice twice and he claims it is what cured me so he could sell more to others. I put no more faith into this than the 10 million diet pills that are "part" of a diet program that includes healthy eating and exercise. mmmmaybe it's the healthy eating and exercise and not the pill?
Anyway, you know what they say about opinions... I just don't think it's wise to encourage uneducated newcomers to ditch chemo and BMT. I was given 2-3 days to live, twice, and 3 years later it's all behind me. Specialists in Oncology don't want to kill people. They suggest chemo for a reason. Maybe if you cant handle it due to age or intolerance turning to a natural cure is your best bet. Not for everyone!
I first wanted to mention that dad is not doing herbs alone. He is taking supplements in conjunction with chemotherapy. So far the combination appears to be doing something- what that something is- the doc and I are not sure yet. All we can say is- he is still alive and feeling okay. Also- every supplement we have him on has some type of proven track record (no matter how small) in medical clinical trials in both the United States and in Japan. One of the reasons why we chose to try it is that clinical trials, which continue today with those supplements showed anti-leukemia effects in both viro and in vitro. The findings on the initial trials are out there, but like anything else, trials will continue and no drug will become the new standard of treatment (ie. replace induction chemo) until it has proven over many trials to be better than the current standard. With that said, there are still many who do not respond to one chemo, but respond to others. The only conclusion to be drawn there is that some drugs and or supplements will work for one and not for all which will probably always be the case.
The goal here to is provide info to others so if they too find themselves not responding to one therapy, that perhaps through discussions with doctors, etc, that they have info to try another.
Secondly- I too am concerned about the post saying Ayurveda can cure leukemia. As a couple of you on this board know, I have been researching those claims. I am not comfortable in making a full post about what i have learned until I have more information. One thing I will say that struck me about what one of the Ayurveda doctors said is: 1.) she said chemotherapy is necessary when it comes to AML. She said it is necessary because the cancer is so fast moving- unlike many other kinds, that it needs to be dealt with immediately (knocked out). However- her second point was that chemo and western medicine in general is very reactive. She said they (doctors in the west) find a problem and they attempt to fix it and/or stop it, but they do not address the cause. She said all disease starts with the body and cells. When the body and cells start to get out of balance and "forget" what they are supposed to be doing- it gets out of whack and disease begins. It sounds like Ayurvedic doctors look for the cause and try to treat that so it can stop the disease from coming back and or reverse it if at all possible. Logically it makes sense.
I will continue to research this out and give information when I can. At this point, the three Ayurvedic doctors I have spoken to in the United States who have a combined 58 years of experience (with extensive training both here and in India) said to be weary of blanket claims. They said leukemia can be treated with this type of medicine, but early stages react better than later, chemo should be done first and chronic leukemias respond better than acute. I still want to speak with a number of other doctors. I will post more when I have more.
One last thing--- dad has trisomy 13. It is a genetic mutation that I have not mentioned before. Like FLT3 it is extremely hard to treat and people that have this mutation in AML have a very poor prognosis, perhaps worse than those with FLT3. It is also known that people with trisomy 13 can and do achieve complete remission, but it is usually very short lived- like dad. With that said, there is another drug still in trials that I have been all over because it has shown some promise against AML and specifically AML trisomy 13 patients. The drug is lenalidomide. It is currently only approved for patients with MDS and Multiple Myeloma. It is still in clinical trials and has been for a few years for AML. It is extremely expensive and without insurance coverage will be tough to get. I believe that will be our next step should the path we are on prove to be failing.
There is also a clinical trial going on right now which is in phase II at Sloan. It is an experimental vaccine for AML. It is my understanding that you have to be in remission to get it and they are attempting to see if they can use this to stop AML from relapsing. ( I have done so much research I can not be certain, but if my mind is on point, I believe 9 people were in the initial study- 4 of them passed away, but it appears to be working with the other 5, but it could be a fluke- we can never really be sure with the disease as you well know) . We are also interested in that vaccine if we can get him into remission again.
I am not suggesting that others do or try any of this, it is just what we are looking at and may be interested in ourselves. As always I will keep you updated as things progress. I will also post more on ayurveda and any other treatments I can flush out.
All my best,
Heather