Alternative medicine for AML-M4

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• August 15, 2005 at 8:27 am #8246
  Sigit

  Member

  Dear all

  My little daughter has been diagnosed with AML-M4 and now she is under holistic treatment, since we did not sure with chemo/western procedures, as well as the chance.

  I need your suggestion, advice, help and other information related to other alternatives supplements, such as plants, beans, etc, that can increase her body and stamina to fight the illness and to increase the chance of healing.

  Thanks for your attention.

  Sigit W.W

  August 15, 2005 at 10:50 pm #8247
  lindajo

  Member

  I think that you are incredible brave to look into holistic treatments. AML-M4 advances so rapidly that I would be afraid to try to do just one type of treatment.

  Many western doctors will work with holistic doctors they just have no training in that area and very little in nutrition that they won’t recommend treatments.

  I know that Fred Hutchinson in Seattle Washington, a center of excellence for MDS, works with alternative doctors and nutritionists on their team. At last year’s convention for the Aplastic Anemia- MDS Foundation annual convention one of their doctors stated that they try to work with other specialists in the holistic realm. You might seek out their help.

  You might also look to St. Jude children’s hospitals for guidance.

  I will pray for Rayi.

  August 15, 2005 at 11:46 pm #8248
  Donna

  Member

  Hello Sigit,
  I’m so sorry your little one has to endure this disease. Children are amazing when it comes to the strength within them. I would tend to agree with Linda jo – because aml-m4 advances so quickly perhaps it may be best to try to combine the 2. They have come so far with treatment, perhaps you could have a consultation with someone. I do realize you are in Indonesia, don’t know if travelling to the states is an option for you. I don’t know how cost and medical insurance would come into play.
  Could you perhaps email Audrey Hesson from the mds foundation? – Little Rayi is so young hopefully someone can help.

  All the best,
  Donna

  August 16, 2005 at 12:15 am #8249
  Sandy M

  Member

  I’m very sorry to have read about Rayi and you sigit, Children are so precious and with a illness such as this you must be terrified !
  Don’t give up though, try everything you can and your family will be added to my prayers.

  August 16, 2005 at 1:06 am #8250
  Terri

  Member

  My prayers are with you, How hard it must be to watch a child fight these diseases. I agree with the others maybe combine both the Alternative and the conventional ways of treatment. St Jude’s is an excellent source for Children.
  God Bless

  August 16, 2005 at 3:19 am #8251
  patti

  Member

  I have to echo everyone else here. I highly recommend a combonation of conventional and natural approach. AML in a youngster will go quickly without some strong intervention. Again, St. Jude’s is a good place to start. I bet they’d be willing to combine the natural with the medical. But do the natural! It will help keep her strong if she undergos chemo.

  Patti

  August 16, 2005 at 7:27 am #8252
  Sigit

  Member

  Dear all

  Thank you for your kind reply, attention and information. We decided to put her into holistic treatment since we’ve got information (from the doctors here) that the chance of survival is less than 20% while my daughter will suffer during chemo sections.

  At this Holistic hospital, she only introduce to fruits and vegetables only (food or drink), then some natural/herbs drugs and the last thing are some ‘energy transmission’. Last Friday, she got first 2 bags trombocyte transfussion and the report said her trombocyte was on 148.

  Can you inform us about clinical trial? Anyone have ever experience with this procedure? I’d like to ‘try a bit’ since I read from internet about PEPLIN and their PEP005. It is extracted from a poisonous plants but (they said) effective to cure some cancer especially AML.

  I’d like to hear from my fellow colleagues here.

  Thank you and regards.

  Sigit W.W

  August 20, 2005 at 9:10 pm #8253
  lindajo

  Member

  Sigit, How are you doing? How is your daughter? I didn’t mention that St. Judes’s will treat any child even if you don’t have the ability to pay.

  The 20% that your doctors mentioned seems like a lower number than what I have heard. Have you looked at some statistics at the Leukemia Society?

  You asked about supplements. I have taken many. Vitamin B-12 can be given in a shot or an oral absorbale form. I also took high dosages of Complex B vitamins( this includes Thiamin, Riboflavin, Niacin, Bitamin B6, Folic Acid and Biotin), Calcium, L-Tyrosine( an amino acid) , Omega 3 fatty acids and Vitamin E. I don’t know what you have available in your country. Make sure that a naturapathic or nutritionist reviews the dosages for her weight and age.

  I also changed my diet. I don’t eat white flour, fried foods or dairy. I substitute soy products for milk. I also avoid most processed foods. Steamed vegatables and whole grain rice are very good. I also avoid processed sugars. I eat mostly lean meats, poultry and fish. I bake broil or steam these foods.

  Write soon and let us know how you are.

  August 22, 2005 at 5:08 am #8254
  John in GR

  Member

  Dear Sigit,

  You might want to check the following website which outlines much of my alternative/nutritional journey. You have the most difficult decision of deciding how to proceed. The more info you have, the better. http://www.geocities.com/marlakins/

  John

  August 23, 2005 at 3:00 am #8255
  Sigit

  Member

  Dear Linda

  Sorry for late reply, since I’ve just return from the hospital yesterday.

  Thanks for your email and news about St. Jude. And also about the supplements. I’ll check about these to the doctor.

  We still maintain our daughter condition (HB 10.5k, Trmb 155k, LK 54k) and on last Thursday she’s got her second 3 bags Trmb tranfusion.

  We also have followed every procedure given by the holistic hospital: fruit(and its juice), steam vegetables, organic rice, no meats, no fried food, and others thing you’ve mentioned. To avoid her fever (39°C), we gave her with honey and mixed it with warm water, usually half hour before midnight. Try before with paracetamol (not considered by the doctor) and the next day she refused to eat all the day.

  The problem we faced now is her cough. On Sunday night, during her sleep, she cough all the night and we are worried about her condition.

  Anyway, the 20% (approx) we got, was from the story we heard from the doctors themself. Ie, one state hospital, from 14 AML patiens only 1 survived, other hospital said 1 from 8 AML’s. They said that they have used the latest treatment protocols (from Europe, I forgot about the country).

  Anyway, thank you for your information and I’ll inform to this forum about her latest condition.

  Regards

  Sigit W.W

  August 23, 2005 at 4:08 am #8256
  Sigit

  Member

  Dear John

  Many thanks for the link, as well as your share of experience. Let us discuss it first, with the family and I’ll inform you later.

  Regards

  Sigit W.W

  August 23, 2005 at 2:58 pm #8257
  shirlsgirl

  Member

  Dear Sigit,

  Just want you to know that we’re pulling for little Rayi. Being the mother of 2 daughters myself, I can’t imagine the heartache you must be feeling. Linda and John have given valuable advice. I hope Rayi’s doctor’s can get her cough under control. Sending positive thoughts and prayers her way.

  take care,

  Jody

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