Newby Alternative treatment info

[Shane]

Hello, My name is Shane and my father has been recieving a variety of treatments for MDS symptoms for a year now. He is 64 years old and his counts have been stable since beginning treatment. Currently his Hematologist is prescribing a dosage of Aranesp, but the effects on his quality of life have been negligible. I am a college student and unfortunately I have not put forth the time or efffort do much serious research until now. I have reviewed some of the pertinent clinical information and I have become increasingly interested in altenative/holistic treatments available. If anyone has any suggestions in terms of references in the Chicago/ San Jose, Ca areas or similar experiences, please let me know. Any help would be greatly appreciated. Thank you and Happy Holidays

[patti]

Shane,

If the Aranesp doesn’t work your dad can also try Procrit. Sometimes if one doesn’t work, the other does. Also, if his EPO (erythropoetin sp??) level is normal it’s likely neither of these drugs will work for him. You might check to see if his doctor did an EPO test before giving him the Aranesp.

The best thing I can recommend for alternative medicine is to look for a naturapath that practices “integrative medicine” or has a cancer emphasis in their practice. This person is usually a naturapath that is fully fluent in all of the natural treatments available but will also work with your dad’s doctor to make sure his/her treatments coordinate with what your dad is doing and also make sure there are no adverse affects of anything they might both be doing at the same time.

It would help if you knew what classification of MDS your dad has, if he has any chromasome abnormalities, what blood cell lines are affected, etc. That will help us here be more help to you specifically. There are a number of people doing natural treatments at the same time that they’re doing medical treatment. My MIL has done remarkably well with natural treatments for more than 15 months. She was originally told she had 4-6 months to live. Also, don’t believe what you read statistics wise because so much has changed since those statistics were put out.

I believe there’s an MDS specialist at Stanford and there’s also some at Rush Hosp. in Chicago I believe. Can someone verify that for me?

Best wishes,

Patti

[Jack_dup1]

I have been to Rush Cancer Center, they are a Center of Excellence in regards to MDS.
Jack

[Shane]

Thanks for the response. I definitely have a lot more to learn about this disease and my dad, which in a way has been good for both of us. I’m still at the information gathering phase of this process and I don’t know all the right questions to ask so you have given me some very good places to start. Thank you very much and god-bless

[bhanson]

Hi Shane, this is the greatest site for information on alternative treatments you can use in addition to the standard. Our MD/acupucture/nutritionist from china suggested a peanut tea. It is posted here under “Peanuts.” However, if I lived in california, I would also check out “Peanut Milk” on the web. I have been hearing about its curing effects on all sorts of diseases, but it didn’t click until our recommendation of the peanut tea. Peanut milk is only sold in California, so far, but if you can get it, it is certainly worth a try. We are doing the standard treatments from our doc, but we are also doing the treatments recommended and tried by others on this forum. I am so greatful for their insights. My husband has been holding his own for a year with aranesp as his only treatment besides the “natural remedies” on this site. Good luck and don’t give up. Keep up with these wonderful caring people on the forum. Best regards, Bernard and Bonnie

[Jack_dup1]

Shane,
I should have added that when I went to Rush in Apr 03 I was seen by Dr. Vengupal (Dr. Ven), he is a great guy, Ever since then I send him my counts every month and I can always count on a response from him. When I get advise from my local Hemo, which is not always the best, I write Dr. Ven and get his opinion. Three weeks ago I sent him my counts by E-mail, which I hadn’t done for a few months, and he called me ten minutes later. I said to my wife “is this guy bored”, what Dr. responds to an E-mail in ten minutes.
Jack

[Bruce at Aplastic Central]

Shane,

I host a site and forum at http://aplasticcentral.com that has lots of information on alternative treatments. My diagnosis was recetnly switched from Aplastic Anemia to MDS-RA (actually was originally diagnosed as MDS and the two are very similar).
I was transfusion free for 3 1/2 years on an alternative protocol and got lazy. Am trying to get back on my regimen again after counts began to fall again in September. Let me know if you would like more information.

Bruce

[Jin Don]

Alternative medicine are more accepted now a days due to it’s promising results unlike pharmaceutical medicine, alternative medicine don’t give negative effect such as kidney and liver problems when it comes to long term use. As for my alternative medicine usage, I use medical marijuana. Different strain has a variety of uses and effect depending on your needs. Like this marijuana strain http://www.ilovegrowingmarijuana.com/tangie/. This strain has a very potent effect on chronic pains like back pain and joint pain and a lot more.

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