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.
Tell your dad that we are all praying for him and routing for him. He must be very strong and a fighter, like his daughter.
Keep doing what is working. I think I will look up some stuff on increasing red blood cell counts, I'll let you know if I find anything.
Abby
Heather -- thanks once again for all of your work in reporting all of this to us. I have a question at this point -- what do your oncs think about this? Are they open to alternative treatments? Are there other similar clinical results? One case does not prove anything -- it certainly provides evidence though. But it could be reasoned that your dad would have "recovered" with no treatment. Not that I am saying that -- in fact, I really think you are on to something here. I am sure you have presented this time line to your oncs and I really would love to get their reactions. Is this something you have already done or perhaps intend to ask them?
Thanks again -- I copied the time line into my file -- I will prep something for my onc that I do not see until the end of the year -- but I am sure as I put it together I will have more questions for you. I also hope that this can get out. I might try to hit my old onc up with it, but I have not really wanted to bother him since he left UAB for greener pastures (Mayo Clinic -- more power to him). -- dave
Right now my dad is leaning towards going with the supplements that have been talked about here. He may add Dacogen but just the supplements to start. My dad's body has never resonded to any medication in a textbook fashion so there is additional concern about the chemo due to that. I want a second opinion so we are requesting all of dad's records. However, I am not sure if we can request the second opinion (without having to travel) or if the Dr. has to request it.
Also, I want you all to know how much I appreciate this group of people. Your willingness to share and your support mean a lot.
Thank you.
Theresa
Everyone--my dad (with AML M1) has decided to not pursue chemo treatment at this time. He is going to try the alternative supplemental options. As I understand it my dad has made that decision years ago that if he got cancer he would try supplements first. We are going to send his results to MD Anderson for a second opinion and find another oncologist. The one we have now really isn't of much help or support. It is almost like he thinks dad is almost 74--he has lived a good life and that is good enough. Well, that is NOT good enough for my dad and my family. We are going to fight this and we want someone who will fight with us. I, like Heather, am going to research, research, research...As I learn new things I will share them.
Talk with you. Take care.
Theresa
First to Dave- the oncologists are neither supper-excited or very supportive of our turn to the supplements. The local onc. who is currently the lead on dad's case knew from the start that we were taking them. He did tell us at that time, that he could not condone it as he did not know if #1- they would work and #2- if they would interfere with the dacogen and hence cause that not to work. He said he understands why we want to stop the chemo right now and he was okay with it. He is still convinced that dad's recovery to this point is due to the chemo. We disagree. However, we have 10 years of research behind our opinion and he has not read any of it. My thoughts are- how would he know if the supplements are the cause of dad doing well if he has never read a single thing about them or studied any of the clinical trials? I have and dad's recovery is right on par with what i have read in the clinical trials. That brings me to my next point- yes. There have been hundreds of patients in the clinical trials using K2 M-4 and D3. There is a response rate that can range from anywhere from 40% to 75% depending on how sick the patients are at start of the vitamins and what their diagnosis was (either MDS or AML). Chemo was only a 20% chance of success for dad. So already at 40%- it looks to me like our chances were better with the supplements and without the dangerous side effects chemo can cause. With that said, with dad at 88% blasts at diagnosis- am I happy we did induction? Yes. It knocked the leukemia down. But ultimately it failed. It worked for a couple of months and then it came back. Now, it appears that the K2 M-4 if beating back what the chemo couldn't. That doesn't surprise me either as the research shows that even chemo-resistant leukemia cells have been either killed or forced to turn into normal cells with the use of K2 M-4.
Lots and lots of research out there. I posted some of it. There is more. Dad is doing well and we pray that it continues. He is definitely not the only one as the trials show. Unfortunately, no one has done a clinical trial in the US using K2 M-4. I did find evidence of a trial for cancer using K2 M-3 and Vitamin C. That is not the same kind of K. The K2 M-4 is the one combined with vitamin D3 is the mix for AML and MDS.
Abby- there is a red blood cell count booster out there. It is similar to the white count booster (Neupogen) a lot of AML patients get after their consolidation rounds to help their white count and hence their immune system recover. It (the red cell booster) is not a good idea for us, since dad is showing some dysplasia in his red line. The reason being is- if it boosts the normal rbc, it could also boost the bad ones. So, it is not an option for us at this time, but it may be an option for some of you. They do use it for people with severe anemia. Ask your docs about it.
Here is some info on it---(With low HGB, most doctors in the US would recommend Procrit which is a red cell booster. There is a longer lasting version called Aranesp which means the patient has to inject themselves at longer intervals. However, a recent trial
finding of red cell boosters to cause strokes in patients has limited prescriptions of Procrit/Aranesp in the US. In Asian
countries, due to financial constraints, transfusion is recommended for low red blood cell counts.)
Theresa- I am super excited for your dad. I hope he has the same improvements that we are seeing over here. Anything else you hear about please share. It is sometimes hard to separate fact from fiction when looking at alternative treatments. That is why I really try to research it to death and find the reality in it. So far, the best I have found is the K and D as it has 10 years of clinical trials to back up the findings. With that said, someone tried it first and just because there isn't tons of research doesn't mean it won't work either. So- we will have to be super diligent about figuring it all out.
I hope this helps.
All my best,
Heather
White - 10.1
Red 2.20
Hemo 7.9
Platelets 174
SO- even more improvement in the white and platelet lines! The best counts we have seen since June on both!! The red continues to be stubborn, but stable. No transfusion needed according to the docs. I think the red being low does make him feel a bit tired though. Other than that, he continues to do well and is out shopping with mom for Christmas presents. (He is super glad to be out without the gloves and mask too :-) His ANC is perfect.
As always- will keep you posted.
All my best,
Heather
That is GREAT news about your dad's counts. Thank you for sharing with us!
Theresa
The drugs for red blood cell increase, I read about them, and you are right they can increase the bad lines and the good lines. The docs never thought of this as a possibility and were actually happy that it took awhile for my counts to come up and still is because it means that the good cells are regenerating not the bad, which tend to go up faster. I did read about increasing my B12 and I was B12 after induction. I have been taking a vitamin with some extra B12 and that seems to be helping me to have more energy. Granted I did just have surgery on last Tuesday. I was also reading about this hormone that might effect how your red blood cells come back up, but I need to read some more on it. Hey the fact that your dad is out and about doing the shopping, that is awesome, just think how far he has come. How far all of us have come. Keep us updated about how everything is going.
Abby
--Gloria
White - 10.1; 4.10 -- your dad is at the top of the range.
Red 2.20; 3.20 -- so we are both low here -- 4.40-5.80 is normal
Hemo 7.9; 12.8, again both low -- normal: 13.5-17.0
Platelets 174; 96 -- he is much better than I am, although we are both low -- normal is 150-400
Remember, I am chemo only with no follow-up. My new onc (as of about a year ago) feels that as long as I am stable and feeling OK, that there should be no problem and that this could go on indefinitely. If I should have a relapse, for sure we will give strong consideration to K2 M-4. My feeling is, keep going with it and keep a close eye on it. Nothing in his numbers are that bad, and his platelets are extremely good -- my low has to be the result the chemo -- the marrow just does not have the ability to produce it as before, so in this regard, going lighter on chemo has definetely, in my opinion produced this benefit. Of course, hard chemo for your dad at this point is not even an option, but if it were this could be a major consideration.
Let me join with all of the others in expressing my great joy for you and your father, and for all who are reading and learning about what could be a major breakthrough in AML treatment.
Thanks -- dave
http://lymphoma.about.com/b/2011/11/11/have-age-will-transplant.htm?nl=1
Next -- that is age discrimination. Now, it is one thing if someone is old and has so many other problems that the standard things might even bring on death -- obviously that should be taken into consideration. But those are decisions based on medical expectations, not just on age. Once a person gets above about 65 actual age really is not nearly as important as overall health -- e.g., a 75 year old can be much healthier and expect to live another 10 years than can a 65 year old who has smoked all his life and spent his weekends at the bars.
I am so glad you are getting another oncologist, and also overjoyed that you are part of this discussion -- you could have the answer right here.
Take care -- dave
I also wanted to share this with you. My dad told me about this. He had heard something on the radio about it. It is far from being an available treatment, (they haven't even started animal trials) but something to keep an eye on.
Article: Compound Found in Common Wart Treatment Shows Promise as Leukemia Therapy
http://www.sciencedaily.com/releases/2011/10/111026091233.htm
In addition, there is a wealth of information on this site about new research, drugs, possible coming treatments, etc.
http://www.sciencedaily.com/news/health_medicine/leukemia/
All my best,
Heather
Article: Canadian Researchers Find Potential New Leukemia Treatment with Old Antibiotic Drug
http://www.newswise.com/articles/view/582871/?sc=rsmn&utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+NewswiseMednews+%28Newswise%3A+MedNews%29
Everyone--we have found a new oncologist for my dad. He is the lead leukemia researcher at the IU Cancer Center. We have an appointment with him on Monday the 21st. As of the last blood test my dad's blast were up to 65%. Please pray for my dad and that this new doctor is able to help us. I have been told that he will discuss traditional and alternative treatments as I let them know we are looking into supplemental therapy.
Dave--thank you for your comment. I agree that doctors should not get to decide when a patient is too old. It does not see that this new doctor thinks like the one we "fired'.