[patti]

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

[patti]

Sandy,

That’s interesting. I do not like mom’s doctor and honestly don’t think he has a clue when it comes to MDS. It looks like your fiance went about two years with his MDS? We feel grateful to have had a year when we originally thought it was only going to be 4-6 months. Mom is just now starting to have tx every few weeks. I’m assuming that means her disease is progressing. Who knows though? I hate this thing. Day to day it’s something new. Never stable.

patti

[patti]

Greg,

My MIL is juicing a 1/2 pineapple twice a day and taking 1 tbls of black sesame seeds 3 x’s a day. Seems to keep her hovered around 19k platelets. When she slacked off to 1/4 pineapple a day she took a huge drop and started showing signs of bleeding. She kicked it back up and now her symptoms of bleeding have disappeared. Won’t have an actual number for where she’s at right now until next week.

Patti

[patti]

Danz,

I see two options to consider. One, contacting an employment lawyer and asking him if you have any legal avenues for getting back to work (ie. second opinion, etc). Two, have you considered checking into some form of disability? I have to tell you, I am a die hard red stater and don’t like government programs because I think most are abused, but I do believe there are cases where they are needed and are appropriate and I would consider your case one of those. You might check with Social security adminstration to see what the requirements are for disbility. But first, if you feel like returning to work health wise, I would seek a second opinion.

Good luck.

patti

[patti]

Eve,

My MIL has greater then 30% blasts in her marrow and she’s considered MDS. Her doctor said they wouldn’t consider her AML unless her white count shot sky high all of a sudden (only 1.4 = 1400, right now). So, like you said, go figure. None of it makes any sense does it?

Patti

[patti]

Christina,

Yes, I have read that nuepogen and aranesp can stimulate bad cells as well as good. I think with that information you have to determine how much good the shots are doing and if that outweighs the possibility of bad cell growth. For us, we knew the aranesp wasn’t working so we just stopped it completely. However, the neupogen is working on keeping mom’s white cells at least a little bit in existance so we decided that risk was worth taking and kept her on it. The risk of infection with her white cells so low is so high that any bad cell growth from it isn’t as big a deal. You have to weigh what the shots are doing for your dad and go from there.

Patti

[patti]

Thanks for posting this! I actually got pancreatitis 4 yrs ago when I was pregnant. The doctors could never pin down why (I’m not a drinker) but when my husband and I did some research we discovered nutrasweet was probably the cause (I drank 4-6 cans of diet coke a day for years). Needless to say, the nutrasweet quickly went out the window. I still struggle with having something “diet” vs. sugar because of the calories (don’t want the extras!). I nearly died (and my baby also) because of too much nutrasweet I can’t believe they still have this stuff on the shelves. Natural better, all the way!

patti

[patti]

Hi Terri,

My MIL was on aranesp long ago (last August) for her MDS. She would get shots once a week. After 6 months it did her no good and we took her off of it. We just started procrit last week to see if it would help. From what I’m seeing right now, it’s not. Although they said it can take four weeks for it to start working. If your husband is doing well on procrit I would push back and make them keep doing it. They cannot force you to change to aranesp. My guess is aranesp is more expensive and they make more money on it then procrit because procrit is an older drug. I don’t know how good your doctor is with you but my MIL’s is terrible and I finally threatened to find another doctor unless he did what I wanted so I would just say advocate as much as you can for your husband. Why rock the boat if he’s doing well?

Patti

[patti]

Hi Kathy,

Yes, I read Kevin Trudeau’s book. I think it’s a good, basic understanding of why natural remedies and treatments get ignored. I don’t remember any earth shattering cures but it’s been a very long time since I read it and I have a terrible memory. I think mainly he methodically looks at the pharmaceutical industry and follows the money trail. It’s a good place to start anyway.

Patti

[patti]

Good, good info. The biggest problem I have with physicians today is their unwillingness to admit that the natural and alternative does work. Regardless of what studies have been done, there are successful treatments. But alas, if the drug companies don’t make their money, it’s no good.

Good read. So important for people to understand all of their options.

patti

[patti]

Thanks, Linda. I like your comparison to a computer going in sleep mode. That I can understand! I will just take it like you said, as her body conserving. She was transfused today. She says she doesn’t feel any different. I know sometimes she does feel better after a transfusion. Oh well. Onward we go. Thanks again for such a good explanation.

patti

[patti]

Hi,

MY MIL takes K1 and K2 because her platelets run farely low (around 19K). She’s never had trouble with bleeding. Don’t know if it’s because of the K but we don’t want to find out! Can’t hurt and it might help. That was our thought when she started it.

Patti

[patti]

Tahoe,

Your humor makes me laugh. But you’ll never be convinced, will you?

have a good day!

patti

[patti]

Kathryn,

I am sorry to hear about your dad. Losing a parent is so hard. Thank you for caring enough for others to provide useful information that could affect how others are taken care of. That is incredibly thoughtful at a time when you are mourning.

Prayers to you and your family at your dad’s passing into eternity.

Patti

[patti]

Marsha,

For the record, my comments were not directed at you. Perhaps next time I should put a name to it for clarity. I certainly don’t think doing things the “medical” way is wrong. I just hear a lot of “better check with your doctor” when it comes to the natural stuff and I know from experience the doctors will tell you it’s not worth it. All I’m saying is they’re wrong and it is worth it. For those who transplants work – fantastic. For some, transplants aren’t an option, only drugs are.

Patti

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