Acute Myelogenous Leukemia (AML) Support Group
Acute myelogenous leukemia (AML), also known as acute myeloid leukemia, is a cancer of the myeloid line of blood cells. Patients with AML usually present with symptoms such as fatigue, bleeding, infection, prompting medical attention. An abnormal blood test reading will then result in further testing in a hospital with a hematologist to determine AML.
Let me first say that I am not a doctor, nor an I am giving any medical advice. I am a daughter who loves her father very much and we, as a team, are doing everything we can to help my dad get through this.
Another member here suggested I start this thread as we have been corresponding through email for months and he thought we should share all of our knowledge and experiences so that others may benefit from it if there is any benefit to be had.
First background- then I will tell you want alternative treatments he is trying....
Dad is 70 years old (he just had his 70th birthday :-)
He was diagnosed with AML M0 on April 7, 2011. We brought him to Dana Farber the very next day where we were told the risks, etc. and he began induction within 2 days. At that point he had 88% blasts.
He flew into remission after induction and we were thrilled. Although he had a number of complications during that time, the team was amazing there and he made it through and went home. Unfortunately he became extremely dehydrated from lack of drinking water and was back in the hospital within 5 days in acute kidney failure. They fixed that too, but again he had a number of complications and was almost unable to go through consolidation.
We whipped him into shape and he finally got consolidation. He again ended up with complications: confusion, high fevers, infection, etc., but he again made it through. On our last day in Boston(we were to go home that afternoon) he had blood work and saw the doc. His counts seemed funny. They did a BM biopsy just to check what was going on.
The next week our worst fears were realized. Dad has relapsed. We couldn't believe it. We were devastated. (all this- for 4 months- for nothing we thought). He was 5 weeks out of consolidation.
He was given 4 choices: induction again, palliative care (which is lose-dose chemo for 1 hr. for 5 days on and then 28 days off and repeat, a clinical trial, or nothing in which case we would call hospice and he would die.)
Dad did not want to go through induction again- it was hard on him. He didn't want a trial because that meant months away from home again. He choose the low-dose chemo at home in NY.
The choices were given to him on 7/27/11 and they said he could wait until after his birthday party 8/7 to start the chemo. He was given anywhere from a few weeks to a few months to live.
Here comes the alternative part ......... while we were sitting on the porch on 7/31/11 a neighbor stopped by to see dad. This neighbor has multiple myeloma. He was given 2 years to live. That was 5 years ago. When he was diagnosed, he did not want to do chemo. He went MD Anderson where he was enrolled in a clinical trial. The trial was for 1 year and was given 8000mg of curcumin a day. When the trial was over he was not cured, but his cancer did not progress. He was at 30% when he went to MD Anderson and that is where he is today. He never stopped taking the curcumin. He says he can tired easily because his counts have stayed low, but that in general he feels fine. That was all dad needed to hear. He wanted to try it.
Dad asked for a list of everything the neighbor was doing. He obliged.
He takes:
1.) 8000mg of curcumin a day (4000 in the morning and 4000 a night). Super Curcumin w/Bioperine Time Release 1000mg-60 Tabs
Here is the website:
http://www.agelesscures.com/index.php?main_page=product_info&cPath=3&products_id=1
We bought another brand (1000 mg with bioperine) to get us by at first from a local health food store, but ordered this one since it is the same curcumin he used in his clinical trial at MD Anderson.
2.) Silver : specifically Sovereign Silver (immune system booster)
Here is the website:
http://www.natural-immunogenics.com/
We bought it in a local health food store though
3.) Ojibwa Tea Liquid 16 oz (473 ml) by NOW -
Here is a website: http://www.betterhealthinternational.com/productDetails.asp?prodID=N4855&utm_source=googlebase&utm_medium=comparsionshopping&CAWELAID=556908777&gclid=CNe7q6GwxaoCFQfBKgodBUU8zg
We also got another version from the health food store (Essiac tea concentrate), but we also ordered this version as it is the one our neighbor takes
In addition to what the neighbor has taken for the past 5 years for his multiple myeloma, I have done research and saw some promise for other therapies for AML.
I found that Japan has done a number of clinical trials for AML using high dose vitamin D3 and high doses vitamin K2. There are different kinds of K2 out there, but Japan uses K2 M-4 (Not the K2 M-7 that we see on every vitamin shelf in the USA) It was a tough time to find K2 M-4 for sale in the US, but I finally did.
Here is the website: http://www.nbihealth.com/p-10-osteo-k.aspx
Dad has asked that we throw everything but the kitchen sink at this (AML). His current chemo doctor told us that he can not condone him taking the supplements, because he has no idea if they will #1. Have any kind of interaction with the chemo and #2. if they will cause the chemo not to work (ie. the supplements and chemo could cancel eachother out).
Dad said he didn't care and that he wants to take it all at the same time. SO- dad has become his own guinea pig.
Here is what dad is taking:
(chemo) - dacogen -- just started 8/8/11 - 1 hr a day for 5 days- then that same regiment is repeated every 28 days)
Supplements:
Totals: (a day) - dad started the supplements on 7/31/11 -
His red and white stayed level at that time, but his platelets went up. He has not needed blood or platelet transfusions since he started the supplements- (blood draws only gave us results from 10 days he had on supplements alone before he started the chemo)- He was getting them (transfusions) every 2 days prior to starting them though.
8000 mg of Super Curcumin w/Bioperine Time Release 1000mg tabs- so 8 pills total for the day
1 teaspoon of Silver
2 tablespoon of Ojibwa Tea Liquid
6 tabs of Osteo-K( 3 with breakfast and 3 with dinner)
4 tabs of 1000mg D3 (so he ends up with 6000mg total for day between straight D3 tabs and what is in the Osteo-K)
How he does it:
Morning: 4000mg of curcumin (IMPORTANT- he can not have food or drink 1 hour before and up to 1 hour after so there is maximum absorption into his blood-according to the neighbor)
-- 1 hour later he takes the rest of his morning pills (other meds for other things- thyroid, etc) and he takes 3 tabs of the osteo-K which has K2 M-4, calcium and D3 in it.
-- He takes an additional 2 tabs of 1000mg of vitamin D3 so we can get higher does of D3(Osteo-K must be taken with food)
Before Lunch:
-- 1 teaspoon of Silver (hold under the tongue for 30 seconds then swallow) - once a day
-- 2 tablespoon of Ojibwa Tea Liquid (swallow once a day)
Dinner: he takes
-- 3 tabs of the osteo-K which has K2 M-4, calcium and D3 in it.
--- He takes an additional 2 1000mg of vitamin D3 (Osteo-K must be taken with food)
--- 1 hour after dinner he has 4000mg of curcumin- he waits an hour- takes his night pills and heads to bed.
SO - he is taking all of these supplements AND the low-dose chemo together at the same time.
I have seen trials with curcumin alone, trials with curcumin with D3, trials with D3 alone, trials with K2 M-4 alone and trials with K2 M-4 and D3 together, but never one with using them all. We have no idea what will happen, but we have high hopes. We have not been able to find a doctor who knows about this or is willing to give the thumbs up as they say they have no knowledge on the subject. MD Anderson has a whole group that deals with supplements and alternative therapies as well as trials, but dad does not want to go to Houston. So here we are trying it ourselves.
I will keep you posted on progress. Dad said if it isn't working - since we will have no way of knowing if chemo or the supplements are not working- we will adjust as we go. If he does well- he will stay on this regiment.
From what I have read- curcumin has killed cancer cells in vitrio and in viro. K2 M-4 and D3 have also done that. They said that they have studies K2 M-4 in vitro and seen some leukemia cells mature into normal cells. Of course these are all trials and the docs here and the FDA will not approve things without tons of research. I welcome people to do their own research and also let me know of there are any other alternatives out there that they have either tried or have heard about. Like I said- we have no way of knowing if this will help, but we will keep you informed on dad's progress.
Another member here suggested I start this thread as we have been corresponding through email for months and he thought we should share all of our knowledge and experiences so that others may benefit from it if there is any benefit to be had.
First background- then I will tell you want alternative treatments he is trying....
Dad is 70 years old (he just had his 70th birthday :-)
He was diagnosed with AML M0 on April 7, 2011. We brought him to Dana Farber the very next day where we were told the risks, etc. and he began induction within 2 days. At that point he had 88% blasts.
He flew into remission after induction and we were thrilled. Although he had a number of complications during that time, the team was amazing there and he made it through and went home. Unfortunately he became extremely dehydrated from lack of drinking water and was back in the hospital within 5 days in acute kidney failure. They fixed that too, but again he had a number of complications and was almost unable to go through consolidation.
We whipped him into shape and he finally got consolidation. He again ended up with complications: confusion, high fevers, infection, etc., but he again made it through. On our last day in Boston(we were to go home that afternoon) he had blood work and saw the doc. His counts seemed funny. They did a BM biopsy just to check what was going on.
The next week our worst fears were realized. Dad has relapsed. We couldn't believe it. We were devastated. (all this- for 4 months- for nothing we thought). He was 5 weeks out of consolidation.
He was given 4 choices: induction again, palliative care (which is lose-dose chemo for 1 hr. for 5 days on and then 28 days off and repeat, a clinical trial, or nothing in which case we would call hospice and he would die.)
Dad did not want to go through induction again- it was hard on him. He didn't want a trial because that meant months away from home again. He choose the low-dose chemo at home in NY.
The choices were given to him on 7/27/11 and they said he could wait until after his birthday party 8/7 to start the chemo. He was given anywhere from a few weeks to a few months to live.
Here comes the alternative part ......... while we were sitting on the porch on 7/31/11 a neighbor stopped by to see dad. This neighbor has multiple myeloma. He was given 2 years to live. That was 5 years ago. When he was diagnosed, he did not want to do chemo. He went MD Anderson where he was enrolled in a clinical trial. The trial was for 1 year and was given 8000mg of curcumin a day. When the trial was over he was not cured, but his cancer did not progress. He was at 30% when he went to MD Anderson and that is where he is today. He never stopped taking the curcumin. He says he can tired easily because his counts have stayed low, but that in general he feels fine. That was all dad needed to hear. He wanted to try it.
Dad asked for a list of everything the neighbor was doing. He obliged.
He takes:
1.) 8000mg of curcumin a day (4000 in the morning and 4000 a night). Super Curcumin w/Bioperine Time Release 1000mg-60 Tabs
Here is the website:
http://www.agelesscures.com/index.php?main_page=product_info&cPath=3&products_id=1
We bought another brand (1000 mg with bioperine) to get us by at first from a local health food store, but ordered this one since it is the same curcumin he used in his clinical trial at MD Anderson.
2.) Silver : specifically Sovereign Silver (immune system booster)
Here is the website:
http://www.natural-immunogenics.com/
We bought it in a local health food store though
3.) Ojibwa Tea Liquid 16 oz (473 ml) by NOW -
Here is a website: http://www.betterhealthinternational.com/productDetails.asp?prodID=N4855&utm_source=googlebase&utm_medium=comparsionshopping&CAWELAID=556908777&gclid=CNe7q6GwxaoCFQfBKgodBUU8zg
We also got another version from the health food store (Essiac tea concentrate), but we also ordered this version as it is the one our neighbor takes
In addition to what the neighbor has taken for the past 5 years for his multiple myeloma, I have done research and saw some promise for other therapies for AML.
I found that Japan has done a number of clinical trials for AML using high dose vitamin D3 and high doses vitamin K2. There are different kinds of K2 out there, but Japan uses K2 M-4 (Not the K2 M-7 that we see on every vitamin shelf in the USA) It was a tough time to find K2 M-4 for sale in the US, but I finally did.
Here is the website: http://www.nbihealth.com/p-10-osteo-k.aspx
Dad has asked that we throw everything but the kitchen sink at this (AML). His current chemo doctor told us that he can not condone him taking the supplements, because he has no idea if they will #1. Have any kind of interaction with the chemo and #2. if they will cause the chemo not to work (ie. the supplements and chemo could cancel eachother out).
Dad said he didn't care and that he wants to take it all at the same time. SO- dad has become his own guinea pig.
Here is what dad is taking:
(chemo) - dacogen -- just started 8/8/11 - 1 hr a day for 5 days- then that same regiment is repeated every 28 days)
Supplements:
Totals: (a day) - dad started the supplements on 7/31/11 -
His red and white stayed level at that time, but his platelets went up. He has not needed blood or platelet transfusions since he started the supplements- (blood draws only gave us results from 10 days he had on supplements alone before he started the chemo)- He was getting them (transfusions) every 2 days prior to starting them though.
8000 mg of Super Curcumin w/Bioperine Time Release 1000mg tabs- so 8 pills total for the day
1 teaspoon of Silver
2 tablespoon of Ojibwa Tea Liquid
6 tabs of Osteo-K( 3 with breakfast and 3 with dinner)
4 tabs of 1000mg D3 (so he ends up with 6000mg total for day between straight D3 tabs and what is in the Osteo-K)
How he does it:
Morning: 4000mg of curcumin (IMPORTANT- he can not have food or drink 1 hour before and up to 1 hour after so there is maximum absorption into his blood-according to the neighbor)
-- 1 hour later he takes the rest of his morning pills (other meds for other things- thyroid, etc) and he takes 3 tabs of the osteo-K which has K2 M-4, calcium and D3 in it.
-- He takes an additional 2 tabs of 1000mg of vitamin D3 so we can get higher does of D3(Osteo-K must be taken with food)
Before Lunch:
-- 1 teaspoon of Silver (hold under the tongue for 30 seconds then swallow) - once a day
-- 2 tablespoon of Ojibwa Tea Liquid (swallow once a day)
Dinner: he takes
-- 3 tabs of the osteo-K which has K2 M-4, calcium and D3 in it.
--- He takes an additional 2 1000mg of vitamin D3 (Osteo-K must be taken with food)
--- 1 hour after dinner he has 4000mg of curcumin- he waits an hour- takes his night pills and heads to bed.
SO - he is taking all of these supplements AND the low-dose chemo together at the same time.
I have seen trials with curcumin alone, trials with curcumin with D3, trials with D3 alone, trials with K2 M-4 alone and trials with K2 M-4 and D3 together, but never one with using them all. We have no idea what will happen, but we have high hopes. We have not been able to find a doctor who knows about this or is willing to give the thumbs up as they say they have no knowledge on the subject. MD Anderson has a whole group that deals with supplements and alternative therapies as well as trials, but dad does not want to go to Houston. So here we are trying it ourselves.
I will keep you posted on progress. Dad said if it isn't working - since we will have no way of knowing if chemo or the supplements are not working- we will adjust as we go. If he does well- he will stay on this regiment.
From what I have read- curcumin has killed cancer cells in vitrio and in viro. K2 M-4 and D3 have also done that. They said that they have studies K2 M-4 in vitro and seen some leukemia cells mature into normal cells. Of course these are all trials and the docs here and the FDA will not approve things without tons of research. I welcome people to do their own research and also let me know of there are any other alternatives out there that they have either tried or have heard about. Like I said- we have no way of knowing if this will help, but we will keep you informed on dad's progress.
It's not what we had hoped for, but we are still hoping for the best, and are primed to go ahead with the Osteo-K/D3/curcumin regimen alongside all of this. We won't just leave it up to Vidaza, since we have no idea if it will work for him. It is usually reserved for folks with less than 30% blasts, but dad has between 31 and 40%. So, they are not sure how it will go. However, his blood counts are somewhat stable, and though his WBC is low at 1.0, his platelets are normal.
Anyway, please send positive energy, prayers, and all the rest our way, as we go forward trying to heal my amazing dad.
thanks so much,
marion
Your Dad, You and family are in my prayers. I meditate every morning and will be sure to send healing energy his way.
I am so sorry that you are going through this. It is so hard. Be sure to take care of yourself right now too.
Blessings,
lily
I'm thinking of you and your father. I understand your situation and truly sympathize. Give dad lots of love - it will make him feel better, and you, too! Best to you and your family. xo
Dave, thanks for your kind words. Yes, we're going to combine Osteo-K and other stuff with his Vidaza, for sure. We have mentioned it to his doctors - one of whom said she "honestly think(s) it will not play a role", and the other said vitamins are fine, just not Vitamin C or E because the strong anti-oxidants can be problematic in combination with chemotherapies. He said he doesn't know anything about Vitamin K. I sent them both some of the studies from Japan and one of the doctors just said that the studies were too old (2001 and 2005) to take seriously. Whatever that means. So, we're just ploughing ahead on our own!
My only concerns are whether any of these items (Curcumin, Osteo-K, or D) will be an issue with antibiotics (they have him on an antibiotic to stave off any infections since his WBC is so low), and also about calcium toxicity from the D. I read something about a study that used Vitamin D analogues that had low calcemic activity.
Does anyone know anything about this, or if they're available? Heather, have you read anything on this in your research? Has your dad taken antibiotics while on this regimen?
See the following on low-calcemic vitamin D:
(read section on differentiation of myeloid leukemia cells)
http://www.discoverymedicine.com/Julian-L-Ambrus/2009/07/26/attempts-to-induce-differentiation-of-neoplastic-cells-to-normal/
on using Vitamin D analogues with lower calcemic activity:
http://ajpcell.physiology.org/content/300/3/C526.abstract
http://www.ncbi.nlm.nih.gov/pubmed/10322128
Best to all,
Marion
My husband is 3 months post transplant. Our hospital is the Juranvinski, Hamilton Ontario. I have mentioned the NBI Osteo K to a couple of the doctors and nurse practioners. They always mention the likeihood of clots.The general consensus is stay away from alternative meds.
Unless they take the time to read through all the info I have given them, they can't really be informed.
At this point my husband is taking a small dose of prednisone, so I have added osteo k to his vitamins. (Multi vits. Vit. D3, calcium and Magnesium) Hoping this will stave off any osteoporosis, which can set in.
We know of a few people treated with Vidaza, and they all have good reports. I don't know what Princess Margaret is like, however it gets a good name. The Juravinski is really a wonderful place. Cant' complain We have had really good treatment. (Even if sometimes we have to keep on top of things.) With so many people invovled in the treatment, you have to keep on your toes.
I am thinking of you and your dad. Take care and God Bless!
Sandra and Ben
I am a 69 year old male from Georgia and was diagnosed with MDS and ALM in early November 2012. I had been feeling tired and weak for a long time but didn't seek medical help unitl I fell and cut my leg. While running blood tests for infection, my blood count was found to be low and after a Sonogram, a MRI and a Bone Marrow test, my MDS and AML was diagnosed.
The doctor advised I was in the final stages and had 2 weeks to 2 months to live unless I started chemotherapy immediately. I started taking chemo (Dacogen) for 10 consecutive days skipping weekends and then waited 2 weeks before taking it for another 10 consecutive days, again skipping the weekends.
During this time I began looking for 2nd opinions and have visited doctors at Duke University Cancer Center in North Carolina and the M.D. Anderson Cancer Center in Houston, Texas.
My Ga. doctor had advised me I would be lucky to live 12 months and this long only if I could avoid infecions. The N.C. as well as the Texas doctors gave me the same life expectancy and all the doctors agree my best treatment is to take chemo treatments on a continuing basis 2 weeks on and 2 weeks off each month and live as long I can.
I had to stop taking the chemo 3 weeks ago because my blood count numbers were so low. My WBC was .9, my RBC was 2.2, my HBG was 8.2 and my Platelet count was 21. Thye have increased a little since that time and I am scheduled to began chemo again with the next week or two.
I am in good spirits and feel well except I have no energy and am dizzy and unbalanced when walking. I have not missed a day of work since being diagnosed and stay as active as I always was although at a slower pace. I do office work in a family Ford dealership and am involved in several other businesses. I spend evenings feeding my animals, harrowing land on the tractor, cutting grass, etc. so my lifestyle hasn't changed much at all.
The doctors are amazed that I am able to do the things I do and in actuality, I am also. I have looked into alternative treatments but haven't followed through due to time restraints and I guess I am still in doubt that the doctors have it right since I continue to do well.
I believe strongly in the power of prayer and I have numerous people, organizations and churches praying for me and do doubt this has helped.
Thanks for listening and I would appreciate any comments or recommendations that might help me.
You obvioulsy have had very good medical advise. You will find this site helpful in other ways. It is informative and supportive. You will derrive strength as you read about the experiences, treatments, and outcomes of others who share your afflictiion. Others will likewise benefit from you as your share your treatments and results.
I am 76 and was diagnosed with AML in January 2012--13 months ago. I underwent Induction chemotherapy at UCLA Ronald Reagan Hospital. After Induction, I had two round of Consolidation in the hospital. Since then I have had no medications, although I have taken the Osteo K, vitamin D-3, and curcumin used by Heather's father, with great success, described in the initial post and elsewhere on this thread. Starting in the late summer, my blood counts have gradually dropped. In January, a BMB indicated I was on the verge of relapsing; my blasts were 10-20%. At that point, at the suggestion of the manufacturers of Osteo K, I increased my intake of Osteo K to a level of 150% of that taken by Heather's dad and plan to continue at that level for about a month more to see what effect it has on my counts. Heather's dad, who is about your age, has experienced great results and is 17 months out since he stopped taking Dacogen and started taking Osteo K, etc. I think you will be able to pick up the exact chronology of his regimen from Heather's posts. As you probably know, there is a wide variety of cellular abnormalities in AML, and some are more susceptible to successful treatment than others.
After the BMB, my dr offerred three options: more in-patient chemo in a blind trial; out-patient chemo with Dacogen on a regimen different than yours (5 consecutive days of Dacogen in the clinic out of every 28 days); and do nothing. I said I would like to do nothing for awhile and try the Osteo K to see if it might work for me. He agreed and I am using it at the level described above. I will set forth my results in a separate post.on this thread.
I will be interested in your experience with Dacogen since it is an option if Osteo K does not do the trick for me.
Like you and many others on this site, I believe in the power of prayer and have experienced its positive effect on my circumstance. Many of us will keep you in our prayers. I feel I am in good shape and am able to do most thing, although not quite as fast as before. Every day is a blessing.
Again, welcome.
Best regards,
Jonathan
Mvragan: Welcome aboard. I am a 3 year 3 month survivor of AML/MDS with chemo only. I am now 69 and they had to really hit me hard to knock it out ... and then figure out how to save me from it -- but they did and here I am. I cannot recommend that someone follow my path to health -- its not going to work for everyone. Seems the standard treatment now is a transplant ... something that I avoided since my onc said it was a break-even proposition.
OK -- what should you do? Well, if my onc told me that they were just going to give me paliative stuff and keep me going as long as possible, and only gave me a year, well, that just does not sound very inviting to me. I would rather go down dramatically and crash and burn, if you know what I mean.
One reason I watch this thread so closely is that I could relapse at any time and being near 70 it is obvious that they are not going to put me through the chemo again -- plus they say it will not work on a relapse anyway.
Put in "AML osteo-K" as a search on YouTube and take a look at Heather's Dad. He was given just weeks. Others, like Jonathan are also on osteo-K ... in fact, we have not lost any yet. I am thinking this might be my best bet if I relapse. Of course, I have the luxury of watching what is happening and perhaps a year from now (if/when I relapse) there will be many more who have proven osteo-K to be effective.
The chemo is killing your blood cells and that is affecting every organ in your body. Yes, you are amazing to be able to do what you are doing. I was not even thinking about driving before I was DXed. But I am convinced that feeling good is what kills most people with AML. In many cases they don't even know that they have it until way too late to do anything about it. Your body is just feeling way too good, and you think its for real.
I do not believe that osteo-K has to kill your good blood cells in order to kill the blasts. I am not a medical doctor and have not researched it, but for sure osteo-K is not a chemo, and yet it seems to keep the blasts under control ... I doubt anyone really knows why. Perhaps the same reason that it is good for that bone disease -- I do not want to attempt to spell it osteoporosis or something like that ... sounds like holes in the bones.
I am not advising you what to do -- I could not live with myself it I did that and someone were to die becaue of it. All I can say is if I were you I would go back and re-read every post on this thread -- I really think you have stumbled on the right place, perhaps as an answer to your prayers. I am convinced that the hundreds -- perhaps thousands -- of people who I know prayed for me had much to do with my being here now. But it was not miraculous -- it was the practice of good medicine and what God enabled the good researchers and doctors to do that saved me. I pray that you will make the right decision -- it does not have to be an either - or. Perhaps some combination of both.
Please stay aboard and help us -- you can see how we help each other, and if we have several that are staying healthy using osteo-K after they were given little to no hope, that will be as good as a scientific medical trial.
Take care and God bless -- dave
I just returned from NY where dad and I did a video update.
He was looking great and told me it is the best he has felt in a long time. He spoke about his journey, how he is feeling today and then I followed him around a bit for the day. The video will be a bit choppy since I have no clue how edit such a thing. It will just be a bunch of clips but you can see dad in his element. :-)
It was a wonderful visit. We should have it up on YouTube soon and I will post the link.
I want to remind those on the board that dad is willing to speak to people on the phone. If anyone wants to chat with him or has questions, he would be happy to answer them. If you contact me I can get you in touch.
Best,
Heather
After seeing so may doctors searching for a better diagnoses I decided I would go to the M.D. Anderson Cancer Center. Since they are known as the worlds best, prior to going, I had decided to do whatever they recommended. I was scheduled to be there for 5 days but after one day, the doctor released me to go home with the recommendation that I do as my Ga. doctor had recommended and take chemo (Dacogen) 2 weeks of each month on a continuing basis.
I have had 2 rounds, 20 chemo treatments, and had to stop 3 weeks ago after my 20th treatment due to my blood count being so low. My numbers have improved a little and I am expected to start again next week.
I have had 2 blood transfusions, one in December and another in January. I have not had one in February because my doctor said she wanted to develop a pattern on what my numbers were doing and a transfusion would skew the results.
I have numerous alternative medicines but my doctor has asked me not to take them right now and I have complied so far.
Now for the crazy part: I have a friend that introduced me to his friend, a biologist. This guy had a "cancer machine" that supposedly cures cancer. The theory is all cancer cells contain bacteria and this machine kills the bacteria and therefore the cancer cells.
A doctor Rife supposedly developed a powerful microscope back in the 1930's that proved bacteria was in all cancer cells and he found the right high radio frequency that would kill the cells.
This is a lot more complicated and that I state but I met with the guy that had the machine expecting him to try and sell me something. I found him to be a great and concerned person with his only interest of trying to help me. He told of his experiences of working with a doctor treating people in Honduras as the machine is not approved and therefore illegal in the U.S.
Long story short, he loaned me the machine and I am taking treatments by sitting the controls by following a printed protocol and simply laying within 2 feet of a tube that puts out high frequency radio waves to kill the cells. My doctor is aware of me doing this and while her first comment was this is nothing more than "Hocus-Pocus", she asked a lot more questions about it after my latest test results reflected improvement for no apparent reason which she couldn't understand.
I should add I am not thoroughly convinced the machine is doing anything. I'm a normal person and don't believe everything people tell me but I know the guy with the machine believes in it and only has my best interest at heart. This cost me absolutely nothing and the doctor says she cannot see where it could be detrimental to me so I'm giving it a try.
I just thought I'd mention this and in no way make any claims or intend to try and influence anyone in any way.
I'm continuing to work each day going about my normal exhausting routine of being out by daylight and returning home after dark each day. I feel good except for having very little energy and I remain somewhat unbalanced on my feet.
I am in my fourth month after being diagnosed with both MDS and AML in their final stages and most people tell me I look and act no different than before.
I have enjoyed reading the comments on this site and I definitely plan to follow up and give much consideration to the alternative treatments mentioned herein.
It was good to know that there is this forum to voice out everything in your mind. Somehow it releases stress even though I don't know anyone here.
For everyone's info, my father was diagnosed last January with high-risk MDS, that is what the doctor say but I think we are actually in MDS/AML stage already. Dad is now 71 y.o. and has gone a lot in terms of his health. I mean, he is not that really super normal and healthy. His pitiutary glands was already taken out about 25 years ago. And that time, I was only in my 6th grade and our youngest was on 1st grade. He was operated conventionally and undergo 25 days Cobalt (I think this is the radiation part) to burn the remaining tumor. To cut short the story, he has lived the normal way after that, but retired from being policeman for the reason of permanent disability. He and my mom raised us and put us all in college. He had his first confinement after that 20 years (2006) due to electrolyte imbalance (his sodium is going down) and which the doctor said is basically the effect of pituitary adenoma. From then on,we have regular check ups with his doctors. In 2010, he was again admitted and put into intensive care for a week because of seizure episodes. Again, electrolyte imbalance and MRI disclosed episodes of strokes as well in his right brain. From then on, we have been in and out of the hospital due to various sickness and mostly due to pneumonia. My dad is 300 lbs by the way, this is another side effect of having no pituitary glands at all. His not really moving so well, he is afraid he might fall, well I guess his knees can no longer support his weight that is why. He has been in immunosuppressant (prednisone) for so long already basically due to his thyroid as well and of course that pituitary adenoma. And that steriod basically put him really big despite so much diet.
Fast forward, it started in November where the reds are coming down but the doctor said because of pnemonia again, he was in intensive care for 3 days. First week of January, pneumonia cleared and all his tests are good except RBC so doctor ordered BMA and that is the beginning of another story for us.
Our doctor ordered 6 mos treatment of Vidaza. THe doctor said it is not a chemo drug because all my siblings are totally against chemo as we had a relative who had that treatment and is really so healthy prior to that but didn't make it though. So we were positive on that medicine.
Unfortunately, the distributor here in Philippines expired its contract with Celgene and the nearest is Singapore to order that medicine.
While waiting for Vidaza, we brought our father to his present doctors (neurologist, pulmonologist, endoctrinologist and cardiologist) to tell them our father's condition and the course of action we are going to take for the next six months.
Little we know, our neurologist called caridologist and gave the info about our father. We saw the neuro in the morning and the cardio in the afternoon. Our cardiologist told us to weight risks and benefits on course of action we are going to take. He said he is more after my father's welfare and basically weighing the effect of that Vidaza to his current condition. Chemo drugs are given and administered to people who doesn't have really pre-existing conditions. My father is not among them that is what he said. My father have been taking a lot of medicines and supplements considering his condition, i.e. thyrax & prednisone (from endoc), keppra and topiramate (for his seizures), supplements like fish oil, CalMag, Vit C, and Ansimar (he is also by the way a COPD).
So went back to our hematologist and asked specific questions to him. What that Vidaza is going to do with my dad's resistance. Well, basically he thinks the side effects can be managed by my dad. But as to whether it will have positive effect on him or not it is really a 50:50. He will administer the Vidaza to lessen the hassle of every now and then having blood transfusion because there are also complications to that. But that Vidaza is not really a cure and the only cure is the transplant which my father is no longer a candidate although he said there are already studies of revisiting the age limit for that transplant.
We asked the effect of Vidaza on his other patients and he said that it is really on a case to case basis. He had a patient that had Vidaza and had good effect but stop in the process because of cost constraint.
That is another point too. Here in Philippines, we don't really have health insurance that shoulder the costs of treatment. It is shelled out from our own pockets. Vidaza is really expensive and the doctor said, if we proceed with it and good results, he will continue even after 6 months. And this is something that we don't know either we can sustain. We are all just common employees of private companies here in our country.
We are still weighing things while waiting for the drug.
My dad is ok and is also on the verge of having sometimes forgetting things. What is in his mind always is like eating and eating. He doesn't move a lot and always just lying and sleeping. Doctors say that is common for those people w/out the master gland.
Hopefully you can give me some thoughts on this, anyone who had Vidaza here, how was it?
Please include us also in your prayers. We have ordered already the Osteo-K and will try those alternatives and hopefull will have positive effect on him.
Thank you for the time and eyes for the reading this.
Sincerely
Arsyl
Philippines