[cthomas555]

Janeann, the former president of the AA/MDS Foundation who died last wore a Desferal pump 7 days a week for about 12 years(?). He attended all their conferences welcoming and comforting new patients. He also traveled abroad wearing his pump in his breast pocket to international conferences.

I did not like being on the pump at all.

This is another good site I enjoyl

http://www.marrowforums.org/index.html

Chris

[cthomas555]

Patti says:

“Quite frankly there are a lot of drugs being used anecdotally also. Danazol anyone?”

I counted at least 46 clinical studies for Danazol and Myelodysplastic Syndrome on Medline.

Patti, are you sure you know what “anecdotal” means???

If I was or had been a patient on Danazol and read what you wrote, I think I’d be worried. I think I would be fearful…

[cthomas555]

About grinding the Exjade tablet…

The pharmacist said it also ok to use a pill crusher from the drugstore. Just make sure you use nothing aluminum in the process.

Chris

[cthomas555]

janeann, I am not on Desferal now, but I did start on the Desferal subcutaneous infusions overnight 5 nights a week, initially.

Unfortunately the nurse who came to my home and set me up each night, did not change the infusion site each time and I developed hives in the area. We moved the needle to another area but the hives worsened and the doctor took me off of it.

Several months later I was given Desferal infusions after each monthly tx with no adverse reaction.

Then I started on the Exjade in Feb or Mar 2006.

[cthomas555]

Patti states, “Third, the statistics you stated are for those who accept chemo, not those who do not.”

Would you please give a reference for that statement? That claim is not stated in the article from the Cancer Society.

“I am quite aware that complimentary medicine is a growing field. Too bad it doesn’t get advertised.”

It is “advertised” right on their website. Or, you could certainly ask if it’s available. You know everything else…how could you not know that, eh.

Or, for goodness sake, google complimentary medicine and myelodyspastic and it will give you the names of hospitals that offer it…MD

Patti you behave like a juvenile. If things don’t go your way…you pick up your marbles and run home.

God help your retarded sister-in-law who had been placed in your sole care, along with your M-I-L’s house and all her belongings.

I’m not so bitter that I can not wish you well. Being the good Christian that you claim to be, I will pray for you and your family to return to normalcy.

[cthomas555]

Patti,

I’m sorry you feel so put upon. I really believe you mean well with your misguided notion that everyone else is an idiot and that they need you to direct them in what works and what dose they should take and disregard the doctors instructions, and what won’t work according to your “research” and your being the caregiver for your MIL.

You had two years “researching” and practicing (and I do mean that literally) on your MIL (may her soul rest in peace) and you are a self-proclaimed authority on MDS and AML. And you credit yourself for your MIL living a year and a half because of the choices you made for her treatment.

Actually, 4% of patients 65 or older survive 5 years with AML. 33% of the patients under 65 survive 5 years and those percentages on based on statistic taken over 5 years ago and may have improved by now.

It didn’t take much research to find those facts provided by the American Cancer Society.

Other information that you seem unaware of…as an example…

Since its founding in 2001, the Center for Integrative Medicine at The Cleveland Clinic has been dedicated to providing Complementary therapies.

The use of nutriceuticals (herbs and supplements) is the fastest growing segment of complementary medicine use. Patients who are using or considering such therapies would prefer to receive information from their physicians regarding risks and benefits rather than from their local health food store employee.

Patients are asking that their physicians incorporate evidence-based complementary modalities in their prescriptions for wellness in an integrative fashion.

Physicians are routinely updated on what works and what doesn’t. This information is used to counsel patients on herbs or supplements that have been shown to be very helpful for certain conditions (e.g. glucosamine for arthritis and saw palmetto for BPH), and those which should be avoided (e.g. kava and liver failure, or St. John’s Wort and herb-drug interactions).

And in closing, it seems to me misinformation to advise new patients that all medical doctors are insensitive to patients wanting to use these sources of treatment.

I am glad you can be with your young children once again and give them the loving care they’ve missed during your having to be away so much.

Be well.

[cthomas555]

Brilliant message. Thank you so much.

We’ve all tried so hard to get the message to Patti to no avail and many of us have lost our patience and tempers with her.

My gentlemen friend refers to Patti as an “excitist/alarmist.”

She can put the fear of God in you. I feel so sorry for the new folks when she constantly tells them to disregard what their doctor says because she took care of her mil for several years who is dead now and she, being Patti, knows better than your doctor.

The usual scenario is she will dramatically exit and there will be a movement to bring her back and she’ll drift back in with her “expert” advice all based on anecdotal experience. Oh, well… It feels good to get that off my chest.

God bless.

Christine Thomas

[cthomas555]

My blast, or when there is a lack of, are are always listed on my monthly CBC.

I’m more than certain that different doctors and different clinics can do things differently.

Chris

[cthomas555]

Bety,

Notes from my gerontologist visit says that “iron overload is likely a risk factor for dementia” and that I have “mild memory loss.”

Chris

[cthomas555]

Patti,

Why don’t You find it in the insert since you brought the issue up.

[cthomas555]

AlexJ, grinding sounds like a great ideal. I’ll try that in the morning with my mortar and pestle. That was one of my gripes…waiting for it to disolve with only the stirring.

Chris

[cthomas555]

Jane, I have been taking Exjade for about a year. The therapeutic dose of Exjade is based on the weight of the patient so it varies.

I had no problem starting at the therapeutic level prescribed by my physician other than a little cramping which went away in about a week. The Exjade pharmacist is available by phone to answer any questions about any side-effects you think you may be experiencing .

Also, my doctor’s office made the arrangements for me receiving the medication and how it was going to be paid by my insurance.

[cthomas555]

Choijk, there are those of us who have saved a lot of money by not running out buying up a lot of expensive supplements and overloading our liver trying to process them. Most of them you just pee out.

One of my sons in CA is a diabetic and he is using a lot of alternative medicines and supplements prescribed by 2 alternative medicine doctors working together plus prescribed medication for kidney failure, and now his liver enzymes are in the 300’s and he has too much copper in his body and god knows what else, they’ve just start testing, oh, and way too much biotin, and so on…

I use supplemental oxygen, blood transfusion and a good attitude and has a very good quality of life despite my multiple diseases/disorders.

Good luck,

Chris

[cthomas555]

Dick, I agree with “Covergirl’s” message. it seems to me that the Exjade is working to maintain your present levels, though it may not be working to remove the overload prior to you starting Exjade.

It is removing the iron that you are loading from your current, frequent tx or the numbers would be dramatically increasing.

Chris

[cthomas555]

Josey, I couldn’t agree more. The risk would be greater to not take tx when you need them, such as a heart attack. They have kept me living and breathing for quite a few years with a pretty good quality of life. I do receive irradiated and leukocyte reduced blood and I think that’s as safe as it gets.

Chris

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