[patti]

John,

Three cheers, brother. We felt the same way. Although transplant was not an option for us, when we looked at the drugs they wanted to offer it was obvious that mom would live healthier, happier and better just doing the natural. And the decision we made has been blessed as well. If I lose mom this week I know we had six more months with her then we would have if I’d listened to her quack of a doctor. If other people want to go through the medical stuff, so be it, but don’t discourage those who want to go natural from doing so. They may just live a little longer because of it.

Blessings,

patti

[patti]

I’ve got to throw two more cents worth in here. I talked to mom’s doctor once about natural stuff and will NEVER do it again. I don’t care how good a doctor is in terms of treating this disease, I truly believe most will tell you you’re wasting your time when it comes to treating things naturally. Yes, there can be some reactions to mixing certain things but I think if you do your research and check with a good cancer naturepath or someone in that realm that you are better off (and safer) then ever asking your doctor about natural anything.

After what my husband and I have watched over the past year with my MIL and several friends and family members we have determined that people go to doctors to die, not to get cured. Stuff that’s supposed to be good for you won’t make you throw up and lose your hair (ie. chemo). Just my honest opinion. I’ve seen too much success with people doing the natural to believe that the medical is worth the risks.

Patti

[patti]

Kathryn,

This is a point I do not look forward to. God promises us 70yrs. Your dad has been blessed with a few more. I will pray your day tomorrow will be peaceful. Somehow words don’t seem to be enough… Hang in there….

Patti

[patti]

We do lots of natural stuff and I’ve never heard of it. Have you tried researching it on the web to find out what’s in it, how it’s supposed to work, etc. etc? That would be my best suggestion.

Patti

[patti]

Rene,

Procrit is a drug they give to try and stimulate the bone marrow to produce red blood cells. It depends on the numbers your particular doctor uses regarding his platelets. Although his platelets are low, everyone has a different “danger” level with low platelets and bleeding.

Had your dad already had a diganosis of a blood disorder or was this just a check up and you found out his blood work?

Until they do a bone marrow biopsy it would be hard to know what he has. MDS is a blood disorder kind of like a “pre-leukemia.” But until you get your dad’s results back it would be hard to know what he has. I know it’s hard waiting. I think that 3-4 day wait seems like eternity. Hang in there. Once you have the results we might be able to give you some better info.

Best wishes,

patti

[patti]

Hi Kathryn,

Haven’t written but I’ve been following your updates on your dad and praying. Usually supportive care just means transfusions but not meds. Supportive care might be something different to different docs but that’s what my doc said it is.

Keeping you and your dad in our thoughts.

patti

[patti]

Frank,

We will continue to pray. Especially that you could get someone over here to help. I am glad you are at least exploring that option. Your babies need both you and your wife.

Find another nutritionist. Even if you have to explain the disease, they will help. Or you could just tell them you need supplements that will help build your blood cells (red, white, platelets) and foods that will keep you healthy. Maybe a naturepath would be a better alternative. Most of them will at least know how to deal with cancer which is really close when it comes to what supplements to take. If you’re interested in knowing what my MIL is taking, let me know and I’ll send it to you offline.

Hang in there.

patti

[patti]

Frank,

You have a very difficult decision on your hands. Perhaps you could wait awhile until you send your girls to China. Right now, they are keeping you going and fighting. Babies need their mommy AND daddy. Sending them away seems so extreme. Would it be possible for a family member from China to come here and stay with your wife and help care for the girls while your wife helps take care of you? It would be better for both the girls and your whole family if you could stay together. I know it’s hard to leave China, but for a temporary health situation like this would they allow a family member to come? Please think about this and see if it’s a possibility.

Keep a positive attitude. I would highly recommend you see a naturepath or nutritionist to help on the natural side of things if you can. Stay around with us for awhile, will ya?

Patti

[patti]

Kristy,

p.s. we don’t tell mom’s doc anything because he’s a jerk about it. You’re better after asking questions of this group if your mom’s doctor poo poo’s the natural.

patti

[patti]

Kristy,

I think some doctors are more open to the nutritional treatments then others. My MIL’s is a real jerk about it. But she’d be dead if it weren’t for all of the nutrition stuff we’re doing if we did what he wanted us to do. Instead, we’re doing it our way and she’s doing very well.

When you look in the phone book for a naturepath, call them and ask specifically if they are an office that treats strictly cancer patients. There are some in our area that do only cancer type patients. They will be most up on the nutrition part of things. If you can’t find a specific cancer one then just try to find a good one (ask friends, etc). Most of the information I found was from reading on the web. I remembering typing in “natural cures for myelodysplastic syndrome” and “natural cures for low red blood cells”, etc. etc. I just typed in specific questions and read what came up. I tried to compare different sources if I was getting conflicting info. Although I almost never did when it came to natural helps.

The big thing to look for is immunity builders. Whole foods and/or supplements that will build your mom’s immunity. Also, blood builders. My MIL takes chlorophyll because it’s a great blood builder. Also, going to a macrobiotic diet. (ie. NO sugar, white flour, hydrogenated fats, etc. etc.)As much whole food as possible.

Anyway, read. Lots. And try to find a good naturepath/nutrionist that deals with cancer. Natural works and will go a long way to helping your mom surprise her doctors by living longer then they think she “should.” I can’t tell you how often I hear that from my MIL’s doc.

Blessings,

Patti

[patti]

Frank,

Hang in there. I know this is hard but keep fighting. Try taking some garlic to see if that will help with the infection at all. Be careful, it will thin your blood also. I know colloidal silver is also a natural antibiotic but I don’t know how you’re supposed to take it. Also, you have to be careful because it’s a metal. Try taking lots of Vitamins C and E right now also try juicing fresh fruit and veggies that are high in those vitamins. Along with the antibiotics they might really help fight your infection. Chin up!

patti

[patti]

Ani,

The big thing in pineapple is bromalein (sp?). I wonder if it would do even a little bit to add a bromalein supplement to your husband’s diet. Just a thought. Maybe with that and the black sesame seeds that would help. I know there is nothing quite like fresh juice but when you can’t, maybe a second option is better than nothing at all. I don’t know about BC but here mom is paying about $5 a pineapple! That’s why she’s only doing 1/4 of a pineapple a day.

Patti

[patti]

Best wishes! Take good care while you’re there. Oh, it rains in Seattle, you know? Ah! Spokane weather is much nicer!

Good thoughts and prayers,

patti

[patti]

Is it possible he’s got yeast on his skin? My MIL had a terrible yeast infection on her skin from her feet to her knees and also on her arms. The doc blew us off and said it couldn’t be that but I treated her with nystatin cream and the entire thing went away. As long as she uses the nystatin cream the rash doesn’t come back. The doctor admitted he must have been wrong. You might just try some to see if it works. If it does, great. You’ll prove the docs wrong. If not, back to drawing board?

I can’t help with GVHD. Sorry.

patti

[patti]

Hi,

Sorry I’m just getting back here. Bill, mom’s doctor is actually in Portland. It’s about 45 mintues from here. So we go there every tuesday and friday. The blood bank is the Portland Red Cross. I’m tending to think after reading everyone’s post is that the biggest problem is mom is being treated at a place where MDS is well known and everyone is up to speed on new treatments, etc. I am going to look into changing her insurance so we can go outside the Providence system for care.

Jim, thanks for the doctor info. I’ll check OHSU (I REALLY don’t like that place) if I can change mom’s insurance.

Thanks again, everyone for all of the help. I think I’d better get proactive in finding another doc.

Patti

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