[patti]

Christine, no, I do not credit myself for my MIL having lived as long as she did. First and foremost I credit the grace of God. Second, I credit Dr.Kou and Dr.Reuter (both naturapaths)fully for what they accomplished. Third, the statistics you stated are for those who accept chemo, not those who do not. For those with AML who do not do any chemo or standard medical therapy the statistics are much worse. In mom’s case, when she switched to AML, we were told two months at best. My MIL chose not do any chemo (that was her decision, not ours).

I am quite aware that complimentary medicine is a growing field. Too bad it doesn’t get advertised. It wasn’t until days before mom died I even learned the Hutch had such a program. When we contacted them we were turned away because mom wanted to do both natural and conventional therapy. Even though the program existed at the Hutch not even the people we talked to that worked there knew. It was another patient that ended up telling me this because she had used the program herself. The info is slowly coming out but it is not readily accepted by many (I’d dare say most) doctors.

Jack, the only void I have in my life right now is mom, thank you very much. Where’d you get your kindness from? I’d like to avoid it.

Mom is gone and it’s clearly time for me to move on. If folks want/need to ask me something they can PM or email me. As for you two, I can’t even wish you well at this moment.

[patti]

Christine,

I’d sure love an example of me putting “the fear of God” in anybody. All I have ever done is try to put out information on what mom was doing that was or wasn’t working for her so that others have other information they can explore. I think my byline says enough. You must think people are pretty stupid if you think they’ll run out and just blanket try something at someone elses recommendation without at least doing some research on it. I tend to think people are just a little more intelligent then that.

I don’t think I’ve told anyone to disregard their doctor. I’ve told them not to put all their faith in their doctor. Research, read, research. But don’t let someone blanket tell you what to do without a person having all of the facts. That, is just simple common sense.

And there are those who did everything their doctors said and they are dead now also. Your point? I haven’t yet met anyone who’s had AML and not treated it medically and still survived. My MIL went a year and a half. I’d say that’s not too bad. Most would die within months. You can call it anecdotal if you want.

Anyone living or taking care of someone with this disease has a lot to offer folks coming here because we’ve walked in those shoes. Because you don’t like our chosen method of treatment doesn’t mean it’s any less important for people to know there are other options. And I never said I know better then anyone’s doctor. What I have said is that most doctors know nothing about natural medicine and it’s wise to consult with an ND who knows the natural stuff. And, every doc I’ve met poo poos the natural and says it’s a waste of time so what help is that to someone looking for more information?

No, I don’t have a usual scenario. But I can name a few names of folks who do. Anything they don’t agree with as “by the doctors book” is suspect and therefore shouldn’t be mentioned. Quite frankly there are a lot of drugs being used anecdotally also. Danazol anyone?

Glad you feel better getting it off your chest. Nothing like ruining someon elses day to make yourself feel good. I left before because there is no human being that deserves to be treated the way some of you folks have treated me. I came back only because my MIL still had MDS/AML and I needed the support as much as anyone else here does. Despite what you might think, I am still human.

My wonderings were pertaining to the fact that mom is no longer here now, perhaps it’s time to bow out for that reason amongst others. The witch hunt will never end, will it?

Have a nice day.

patti

[patti]

I’m using a number of sources. We’ve talked about this with mom’s docs (because she had a huge quantity of blasts and I didn’t know any better in the beginning), my sister’s husband is a doctor who has told me this, he also had a daughter who died of leukemia and dealt with her docs at OHSU for four years. He said blasts were not listed on any pediatric counts he had ever seen there, and several people here have also stated that. The hospital mom was in never listed them out. How many sources do I need to state? Many of the conversations I had with docs occurred in the very beginning of mom’s dx because I’d come here and see the same thing Jonelle is seeing and then wonder. So, from multiple “medical” sources, it does not appear to be the “standard” to have blasts listed on CBC’s. That does not mean that I think you and Jack are lying or that they aren’t listed on yours. I’m simply telling someone, it’s not “usually” the standard. Jonelle was concerned about blast count and I was trying to put her mind at ease for the moment, that if her husband’s doctor was not concerned about blast count hopefully that meant everything was normal.

For Pete’s sake, after researching and living this disease, AML and blood counts for two and a half years, I think I can share a few things with a pretty good amount of knowledge.

I gotta tell ya, for all the crap folks like to pass around I keep wondering why I come back here….for some reason I thought what we learned with mom (not just natural stuff) would be a help to other folks. I’m beginning to wonder…..

[patti]

Jonelle,

Again, MOST CBC’s do not list the blast count. These ones that have it listed I think are in the minority. Also, it depends on where that 1-2% of blasts are. Are they in the peripheral blood? Or the marrow? In the marrow (which can only be seen from a BMB) anything less then 5% is normal.

Some people just deal with disease by not wanting to know much about it. Perhaps your husband is like this?

Hang in there. It sounds like if blasts were an issue that the doc would let you know.

Patti

[patti]

Lizy,

This is an interesting question. My in-laws lived in Philly for 60+ years in a home that was 200+yrs old. My FIL had lymphoma twice between the ages of 45 and 55. When they moved they had their home radon tested and it tested positive for too much so they had to have it fixed before they could move here. Ten years later, my MIL was dx with MDS which we believe was allowed to proliferate because of the stress of taking care of my FIL who had Alzheimers for two years (she kept him at home the whole time). Both disorders are blood diseases and the only commonality we could find was possibly the radon in their home in Philly. We’re figuring it didn’t affect my MIL until much later because she was so healthy her body was able to fight off the bad cells for a long time. But once she underwent the two horrendous years of stress her body got weaker because of the stress and the leukemic cells kicked in.

Regardless of if we “know” the cause or not, chemicals are known to damage the body in many ways. So I would say if there’s a chance you’re dealing with radon, taking care of it is a “better safe then sorry scenario.” It sounds like that’s been done with the ventilation system, etc. Perhaps have the house retested if you’re concerned and not sure?

Just my .02 worth.

Patti

[patti]

LuAnn,

My MIL had the rash reaction after she’d been on Exjade for two weeks. We took her off of it for two weeks and when she went back on it she started at 125mg. a day (she took one 250mg tab every other day). We did that for a week then went back to 250mg a day and then 500mg a day. She never did more then 500 a day because it was very effective for her at that amount. Once we did this she didn’t have the rash anymore. Perhaps you could try the same thing and it would work for your dad.

patti

[patti]

Terri,

I hope you don’t feel like I was questioning what Bob is taking/doing. For me, it’s more throwing things out there because what works for one might not work for another, etc. The more info about what different people did/do can be helpful at times for others reading/searching. I’m with you when it comes to rocking the boat. We felt that way with mom long ago. We did not want to make even little changes to her routine once we got it to a certain point because it seemed to help and we didn’t want to undo anything we had done. I just think it’s interesting to note the differences in doc suggestions/practices. Hope it came across that way.

Patti

[patti]

[patti]

The Fred Hutchinson Cancer Center in Seattle is one of the tops in the country for BMTs.

Patti

[patti]

Terri,

It sounds like Bob’s veins might be doing what mom’s did in Aug. ’06. Mom’s veins got to the point where it took two people pushing and massaging to get any blood out of them and they bruised horribly every time. You might want to consider having a picc line put in his arm. I don’t say this lightly because mom had a horrible time having her picc put in. But hers was an unusual case. They do present possibility for infection but mom had hers 8 months and NEVER had a single bit of trouble with it. We were just meticulous to change the dressing once a week and keep it dry in the shower. And in the end, although she had trouble having hers put in, she was so glad to have it. They just hook right to it for all infusions and it’s no trouble at all. There are always plusses and minuses to something going into the body but sometimes the help it would provide trumps the potential risks. Something to ask his doctor about…..

Also, mom’s picc was put in as a stepping stone to a port being done. We never could do the port because of her platelets. Mom’s platelets were at 8 when she had the picc put in the and the surgeon swore he’d have no trouble doing it without bleeding. DO NOT let them put a picc in without giving platelets first!! Anything less then 20K platelets is not enough. Trust me, we learned the hard way.

Take care,

patti

[patti]

Sandy,

MID cells are not the same as blast cells. The breakdown you are seeing of basophils, etc. are the 5 types of white cells that make up the total white cell count. Blast cells can only be seen under microscope and therefore are not on a standard CBC print out. If his blast count is listed it would only be because they have it in there from a slide test they either did that day or previously and put it in the computer to print out with the CBC.

Hope this helps,

patti

[patti]

Jim,

Ummm, don’t be surprised if you get a second bill from the laboratory for the biopsy reading. These are usually separate from the hospital/doctors bill for doing the biopsy. If the hospital lab did the reading there will be a line item on your bill for lab reading services (there is a technical name). If it’s not there, you’ll likely get one more bill. Yep, very spendy.

patti

[patti]

Jim,

Oh! I’ve never “met” anyone else who has had pancreatitis. Nice to “meet” you. Hee. I got that when I was 13 weeks pregnant with my last baby. I don’t think I’ve ever had such awful pain. Have you ever had trouble with your pancreas since? Do you have sugar trouble? Mine caused so much damage to my pancreas I really have to watch my blood sugar even though I’m not technically diabetic. Was just curious about your experience.

patti

[patti]

Hey Terri,

Wow. Those shots must be hard! I can’t imagine the blood blisters. Does the doctor have any good suggestions for them? Arnica maybe?

Hope you have a good trip and this increase in Vidaza does the job for Bob.

Take care,

patti

[patti]

Frank,

How are you doing???? Haven’t seen you post much lately.

Patti

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