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.
My dad is not doing well. He got the second dose of tigecycline yesterday. We are praying it kicks in and works...but the oncologist has asked us to meet with hospice this week in case this doesn't work. If this doesn't work at the rate his WBC are climbing, it won't be long. I made it clear to the doctor that we are not in denial about the reality here but we have not given up yet either so the meeting with hospice will just be introductions. We do not need their services yet.
Irisheyes--how is your mother in law?
My mother (diagnosed AML M0) will return home from the hospital tomorrow after spending 5 days battling with the usual complications of intensive chemo (2nd round, just as strong as the first). She was given white cell booster shots the day after the last dose so she practically hasnt experienced bad symptoms besides a throat infection of some sort.
She entered remission after her first (chaotic) round of chemo. During that time the doctor wanted the bone marrow to get a good clean up, so white cell booster was out of the question until there was no other choice (serious infections). But this time, her remission allowed the doctor to give her the shots much earlier. We really have to thank God for her current health. Nevertheless, Im scared because of the statistics.
There's another issue. Since we live in El Salvador (Central America), there are some tests like cytogenetics that are not performed here, so we do not know those things. All I have is the immunophenotype (which was performed outside the country), which confirms the diagnosis.
Also, our onc here says that bone marrow transplant would be done in case she relapses, which surprises me considering its AML M0 (high risk). He told me that it would have to be a related match since unrelated donors hardly help at all. He also told us he believes there is still chance of chemo only recovery (like 30%) which I dont think is the case. I think hes trying to make things easy for us, and my mother believes him, but she hasnt read everything I have, which may be a blessing.
Take care, everyone.
Ricardo.
I promised a new list with supplements, dosing, and time info. As always, I must say that I am not a doctor, nor am I offering any medical advice, I am just telling you what me and my dad are doing for him, and keeping you all updated on his progress.
We have adjusted things and added things along the way since the start. This is dads current regiment along with the sites where things can be found/purchased. Many of the items can be bought in a local health food store, but we have discovered that #1 they are a lot more expensive and #2 when you buy in bulk online it is even cheaper, so now we buy all online now.
Totals for day of main pills:
90 mgs K2M-4
10,000 mgs of D3
8,000 mgs Curcumin
Note *** There are several other supplements sprinkled throughout the day as well including: (IP-6 , mito forte, sovereign silver, Ojibwa Tea, glutamine)- most of these are to support his immune system in different ways)
THE LIST:
Morning:
Wake Up - 7am
7am - 4 Curcumin (empty stomach - do not eat 1 hour before or up to 1 hour after you take these)
http://www.agelesscures.com/index.php?main_page=product_info&cPath=4&products_id=2
8am - 1 scoop of IP-6 mixed with water (small glass) (empty stomach) http://www.amazon.com/Enzymatic-Therapy-Fort-Inositol-powder/dp/B0001TIFIY/ref=sr_1_fkmr3_2?ie=UTF8&qid=1324954795&sr=8-2-fkmr3
9am - Breakfast
- 1 green monster smoothie for breakfast (we use a 1000-watt Nija blender to make it) recipe: http://www.doctoroz.com/videos/prehistoric-diet-recipes
- 6 K2 M-4 (Take with food) These pills also contain calcium and extra D3 - http://www.nbihealth.com/p-10-osteo-k.aspx
- 3 extra vitamin D3 pills (Take with food) (you can buy at any store)
- 4 mito forte pills (started 11/25/10- He thinks this seems to have
helped clear his head as he has said- or fight what we all call chemo brain- he said it helped clear the fog away that was left after the heavy chemo- he also think it has helped with his energy levels- so he will stay on it) http://www.nbihealth.com/p-18-mitoforte.aspx
12pm - 1 teaspoon sovereign silver http://www.natural-immunogenics.com/
- 3 tablespoons of Ojibwa Tea http://www.betterhealthinternational.com/productDetails.asp?prodID=N4855&utm_source=googlebase&utm_medium=comparsionshopping&CAWELAID=556908777&gclid=CNe7q6GwxaoCFQfBKgodBUU8zg
- 1 scoop of glutamine (mixed with water - small glass)
http://www.nbihealth.com/p-20-glutamine.aspx
1pm - Lunch
4pm - 1 scoop of IP-6 mixed with water (small glass) (empty stomach) http://www.amazon.com/Enzymatic-Therapy-Fort-Inositol-powder/dp/B0001TIFIY/ref=sr_1_fkmr3_2?ie=UTF8&qid=1324954795&sr=8-2-fkmr3
5pm or 6pm - Dinner
- 6 K2 M-4 (Take with food) These pills also contain calcium and extra D3 http://www.nbihealth.com/p-10-osteo-k.aspx
- 3 extra vitamin D3 pills (Take with food) (you can buy at any store)
8pm - 4 Curcumin (empty stomach - do not eat 1 hour before or up to 1 hour after you take these) http://www.agelesscures.com/index.php?main_page=product_info&cPath=4&products_id=2
Thats it. It seems like a lot and it is, but dad is feeling well and his blood work looks good. As I always say, we will keep at this until something forces us to change.
All my best,
Heather
We are all praying for your dad. Any news?
Ricardo,
Thank you for the update on your mom. I pray she continues to do well. As far as the chemo only success rate- he is in the ballpark- we were told 20%, but my dad is older. It is possible she can be in that group, so never give up hope. As far as transplant, i don't know much because dad was taken off the list (they said he wouldn't survive a transplant). With that said, I am not sure why an unrelated donor would not work just as well as a related as long as it was a 10/10 match. My dad is M0 as well. He did relapse, but he is doing well at the moment, so again- no matter what happens- never give up hope. Your mom CAN be in that 20-30%, and if she isn't, (just like we told dad) - we will all keep at it until we find something that works. Don't lose faith. Keep us updated.
All my best,
Heather
There are very few M0 to be found on the forums. I think Ive only read about 5 cases. One of them, however, is a chemo only survivor of AML M0. His posts can be found at the leukemia care boards and his username is Andy Mobb. Even he aknowledges hes a bit of a miracle after 6 years of remission. And to think he failed the first round of induction!
As for the BMT:
Based on what Ive been reading, I wouldnt be thrilled about an unrelated bone marrow match either, because, even 10/10 matches bring much more complications than related matches. The graft vs. host is often too severe and relapse risk is higher. Apparently, there are other differences beyond the matching, so that in the end, the new marrow still recognizes the foreign tissue. Of course, all of this varies from case to case and there are lots of people that have benefitted enormously from a MUD.
Your fathers case is really encouraging, Heather. To be in such good health after five months of relapse is nothing short of amazing.
Keep up your spirits, Theresa. The tygecicline is administered intravenously so lets hope results arent that different from an in vitro experiment.
Most importantly, we must not forget to "consolidate" our efforts. Lets put EVERYTHING we attempt in Gods hands.
Best Regards,
Ricardo.
Have any of you had to get outside assistance for yourself or loved one because of being weak, etc.? Mom and I want to and are able to care for dad but we both have jobs too. Neither of us work qualifies for FMLA so we are starting to research home care assistance and I wondered if any of you had experience with this.
I hope you and your loved ones are doing well. I had someone tell me that all days are good some are just better. He husband has pancreatic cancer...I am trying to look at it that way.
The other struggle for me if everyone says to take care of yourself or you can't help your dad. That's great advice except when do you do that if it is just me and my mom to help with his? Nice thought but not very practical.
Take care.
Theresa
Abby
WBC 13.1
RBC 2.75
Hemo 9.7
platelets 175
I am slightly concerned that his white went higher again (he was at 11.7 last week), but he says he feels like he may be fighting a cold, so I will keep an eye on it for next week. His red has risen for the first time on its own in over 5 months. It is so minute that it could most certainly be sampling error, however, I will keep an eye on that too and if we get another up tick- that could be a new thing happening. He hasn't had a transfusion since Thanksgiving. The count has been steady at 2.72 for 2 weeks, now ever so slightly up. He still looks and feels good. As always- we will keep you posted.
All my best,
Heather
WBC 4.2
RBC 3,26
Hemo 13.0
Platlets 86 (this is the one that has been consistently low -- 150-400 is normal)
I would say that staying consistent at this point is probably as important as being in the normal range. For both of us. We are both doing fine with the numbers we have. If they start to vary considerably that might not continue to be the case.
Thanks -- dave
I am asking for prayers. I just got an update from Theresa and her dad is not doing well.
They started a procedure to try and bring his white count down in the hospital, but it is not working. His white count is continuing to rise. The doctors have given him two weeks to live.
Please pray for a miracle. He is being released from the hospital today to go home. Theresa said they still may try one more round of the antibiotic (tigecycline) next week. I am personally praying that the doc. agrees to double the dose and that everything starts to turn around. I don't want Theresa to lose hope, but she is really down right now.
We need prayers that something starts working here and fast.
We need a miracle.
Please pray for Theresa and her dad.
All my best,
Heather