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.
Dave,
A very interesting and thoughtful analysis. Thanks for sharing it. You had mention earlier what you believed osteo K did, but I did not pick up on the significance. I shall await the replies of others, especially our in-house MD, Cliff.
My next blood draw is scheduled for Jan. 2. I could back off now and see if the blood levels increase, or keep using osteo K until then and see if the blood levels are lower. If they are, then stop the osteo K and await the results of the following month's blood draw.
Thanks again.
Jonathan
I telephoned the manufacturer of osteo K and spoke with one of the founders. (He answered the phone.) I asked him about your/my concern about killing healthy blasts. He said that osteo K attacks only cancerous cells. He asked me about my situation. In doing so, I specifically said I was using it for preventive purposes. He recommended I increase my intake of osteo K to 90 mgs (I am taking 30 mgs) and, when my counts go up, drop back to 45 mgs. I will also read some of the material on the manufacturer's site. The person was very willing to discuss my situation and tell me about studies and results but was hurried. For me, it was like drinking from a firehose. Still pondering and welcome further thoughts.
Jonathan
WBC--1.22
HG--7.8
Platelets--98
RBC--2.21
The doctor had a dark expression as he read the results and said let's do a BMB. Results not back yet. Looking for a positive, I note that the WBC is down and hope that indicates no blasts. We'll see. The doctor said it may be sickely bone marrow
I called the manufacturer of osteo-K and spoke with two of the principals, including one who had a degree in Chemical Engineering from Cornell and an MD from Harvard and was on a board for certification of specialists. He reported that osteo-K differentiates between good and bad cells and kills only the abnormal ones and that the average time for it to become effective is six weeks. He also reported that in a study of 6,000 in Japan, there had been no adverse side-effects reported with doses of up to 135 mg per day. He recommended I increase my dosage beyond 90 mg, which is the amount Heather's dad is taking and I have been taking for about two to three weeks.. I will wait until I get the results from the BMB.
In response to my question as to whether the Japanese study had differentiated osteo-K's effectiveness on various subtypes of AML, he said, No."
I think subtype is important. My abnormality is a deletion at p11. My doctor said it was rare and had not been classified, that rare abnormalities were generally given an intermediate prognosis but that he would classify it in the intermediate to poor prognosis. At a lecture he gave to his medical student on AML and ALL, to which he had invited me, he said that he hoped that within the lifetime of the students that different chemocal protocols would be developed for the various abnormalities. From the little I have read, I think the future may lay with gene therapy.
For those interested in this DS informal "trial," I shall keep you posted.
Best to all,
Jonathan
The results of my BMB taken on Jan 2 are back: 10-20% blasts. What to do next? Some of the following is from an email from my oncologist.
1. A Second Induction. My oncologist says there is no standard reinduction regimen. Clorfarabine is one drug that has been used with Cytarabine(Ara-C) in older people; it improves remission rate at the cost of higher toxicity. Vasoroxin is under investigation in a randomized trial with intermediate-dose Citarabine, in combination, vs. Cytarabine alone.
Normally, for recurrence, we would use high-dose (or in your case, intermediate-dose due to your age), but we do have a treatment that randomizes patients between intermediate-dose Cytarabine(like you received in consolidation) either with or without Vasoroxin, an investigational drug.
There is no evidence that consolidation of second remission prolongs remission duration or extends life, so it is not routine, but many physicians do give something. An alternative maintenance might be azacytidine (Vidaza) or decitabine (Dacogen), outpatients drugs (See below.)
2. Out-patient Treatment. An alternative chemotherapy would be to try a drug used for myelodysplasia, such as Vidaza or Dacogen. The latter are outpatient drugs, although they often do produce a fall in blood counts that might necessitate a short hospitalization. Their efficacy in the management of leukemia is limited, however, and I expect that the rate of remission to these drugs would be about 10-20% and they would take about four months to work (given for five days per month).
3. Alternative Treatment. No chemotherapy and continue to take osteo-k, etc. and see what happens. Heather's dad was on Dacogen and, after two rounds, suspended its use indefinitely. (See her post of 11-11-11 as well as others.) That is when he started to improve. I suspect I would not be able to use osteo-k if I were in a trial. In response to my question as to why my blood counts were so low, my oncologist said I may have "sickly bone marrow" and that may be why I got AML in the first place. If that is the case, does my SBM need another insult of chemicals or the TLC of osteo-k and D-3?
I wonder what are the realistic chances of a long-term remission with further chemotherapy. In current political terms, am I "just kicking the can down the road," and , if so, how far?
Any thoughts would be welcome. I plan to meet with my oncologist this week to discuss where we go from here.
Jonathan
The chances of long term remission with additional chemo are very, very low. The second remission (if it is achieved) is always shorter then the first one. Sorry you have to deal with this situation. I was following your posts and hoped that alternative approach would help you to prevent a relapse.
So sorry to hear about your relapse. I relapsed 11 months after chemo only treatment, and I remember the sinking feeling in my gut. My MD did give me the Clofarabine/Cytarabine protocol and I achieved a second complete remission. I am now scheduled for transplant coming up Jan 22. I did not want to go this route, but since I relapsed my Onc said I needed to, so here I go. I cannot remember if you received a transplant already or not, and if not , is it on the table for you now? You have posted very insightful and heartfelt messages on this board. I have also been following this alternative thread to keep up on other options. Praying for you and your family as you again stare AML down.
Take Care,
Suzanne
after the second remission you can try this trial
http://clinicaltrials.gov/show/NCT00957385
for the maintenance therapy.
I just found out that the maker of osteo-K which contains the MK4 that my dad takes with be on a cancer talk radio show tonight.
We should all check it out -
Tune In Tonight to Hear Dr. Neustadt's
Cancer Radio Interview
Tuesday, January 15 on www.w4cs.com at
5:00 PM PST (8:00 PM EST)
Don't miss Dr. Neustadt's radio appearance tonight on Five To Thrive Live! (www.w4cs.com), an innovative show on health promotion in the face of cancer. Dr. Neustadt will be discussing the research on using MK4 to help people with myelodsyplastic syndrome (MDS), acute myeloid leukemia (AML), promyelocytic leukemia and hepatocellular carcinoma (HCC, liver cancer).
He will talk about the clinical trials on MK4 in volunteers with these conditions, as well as the work he and his partner, Dr. Pieczenik, have done with the FDA. Drs. Neustadt and Pieczenik have received FDA orphan drug designation through their company, NBI Pharmaceuticals, to investigate MK4 for the possible treatment of these diseases. Multiple clinical trials and case reports have already been published in Japan showing the potential benefit of this powerful nutrient in osteoporosis and cancers.
Five to Thrive! focuses on proactive, practical ways to utilize an integrative approach to health including diet, movement, rejuvenation, spirit and dietary supplements to help you to reduce your risk of cancer, heal from a cancer diagnosis, and gain optimal wellness. Naturopathic oncologist, Dr. Lise Alschuler, and research journalist, Karolyn A. Gazella, cancer survivors themselves, will interview Dr. Neustadt on the key scientific findings.
Tune in tonight at 5:00 PM PST (8:00 PM EST) at www.w4cs.com to learn how you might help yourself or a love one.
Best,
Heather
I owe an update on my dad too- will update soon- promise. he is doing very well :-)
Do you think OSteo-K is worth taking when in remission to maintain health? What a great program. I hope conventional onc's will start to recognize the benefits of MK4.
Thank you for posting!!
Ed
I have dad's latest counts. He actually had them on 12/31/2012.
WBC - 11.9
RBC - 3.12
Platelets - 151
Hemo - 10.9
His onc is still amazed and told him he is doing very well. He should have new counts in a couple of weeks. Dad has not had any chemo or transfusions since late 2011.
Our family was thrilled to get another Christmas with him. It was another Christmas we were keenly aware that we were told in 2011 would never come. We feel very blessed. He is doing great! As always we will keep you posted.
Ed - I am not sure about taking osteo-k while in remission. I know it has a lot of health benefits outside of killing cancer cells though.
Best,
Heather
We take the blessings anywhere and way we can get them. It is indeed a blessing to se how great your Dad looked on the video and to see that you have made people take note. Awareness is so important regardless of the outcome. You should be very proud of yourself for the determination to not accept what was put in front of you. We are all in a battle and we will all fight to appreciate life and it's blessings.
Ed