[patti]

Chris and Alex,

That’s great that it can be ground up. I was just suggesting to make sure for the reaons that Jimbob stated. I know some things can’t be and I couldn’t remember if Exjade was one of those. It’s been a long time since mom started it and I hadn’t read the insert since then. Grind away. It was just an idea to double check. Sounds like Alex did that.

Patti

[patti]

Russ,

Generally, the higher the blasts in the peripheral blood, the higher they are in the marrow. Blasts don’t show up in the perihperal blood until they get so high in the marrow that they “spill over” into the blood. So your counts almost don’t make sense. My first thought is someone read the results wrong on the CBC? I would really push for an answer on this because it DOES matter in terms of how well your beating (or not) the AML. Push back. Hard and fast. You do not want things to get out of hand.

God bless,

patti

[patti]

Shellbivens,

I understand what you mean about asking them questions. When it came to taking care of my MIL I was a bulldog. A nice one, but I got my way no matter what. She was my mum-in-law and I loved her like a mom and no one was going to mess with her health but her and I. She was very quiet and shy so she always had me do the talking. I liked her last doctor but I don’t trust doctors as far as I could throw them. I think when medical care is necessary it is always complementary to add in natural. It can only strengthen the body. Keep advocating for your dad! I am so glad I did for mom. You will NEVER regret it.

Take good care,

patti

[patti]

Shellbivens,

Is your dad taking Cod Liver Oil for his heart? If he’s not and I tell you he should start taking it I will get hollared at by some good folks here – so I’ll just say this – if you have a naturapath for your dad, ask if he’s okay with him taking CLO. If no ND then ask his cardiologist if he cares if he takes it. He’ll likely tell you to be careful about the Vit. A. Don’t worry about that. He’s wouldn’t drink a bottle a day. If you get okays for him to take it, have him start taking 2 tbls of CLO a day for 6 weeks and then down to 1 tbls a day thereafter. It should really help open up and clear out his arteries. Not to mention a host of other health benefits.

I’m with you on the chelation therapy. Very good stuff. So many folks have heavy metals in their bodies. Removing the stuff heals a ton of illnesses.

Since you’re interested in natural medicine for your dad, it would be worth finding a good cancer naturapth to work with him. Let me know if you would like help finding one and I can send you a link.

I would not recommend Dacogen for him if he already has so many health problems. As far as I’m concerned, for someone with pre-existing health issues, it’s just a fast road to a sickly death. He may sleep a lot. But at least he’s not outright feeling “sick.” Sleeping is the bodies way of trying to conserve energy. Especially if his heart is struggling. Let him sleep….

take care,

patti

[patti]

Terri,

Good to hear from you. Glad Bob is hanging in there. I understand what you are saying about different machines. Although mom used two different offices to see her doctors her counts were always the same between the too. If she had those differences that would have freaked me out and always made me wonder if they’re really correct or not. Like there isn’t enough stress to go around already, huh?

Take care and hang in there,

patti

[patti]

Alex and Chris,

Reread the Exjade directions because some pills actually say you cannot grind them or they won’t work and I honestly can’t remember if Exjade is like that. Mom just let it disolve. But I’m betting the insert actually says something about about that issue one way or the other. Just double check to be sure.

Patti

[patti]

Jane,

In the US a fairly new drug called Exjade is available. It is taken in the AM mixed with some juice or water. It works well. The only caution I would give is to start at the lowest dose (250mg) not the high doses the drug company recommends. Your dad can incrementally go up from there after his body has gotten used to each dosing step. It is hard on the body to start out at the higher doses. Is there some way a doctor could order it from the US for you? Or is there a way to see if there are any European trials going on with it?

patti

[patti]

Jen,

PLEASE promise you will call your dad’s doc! If he brushes you off – push him. Take your dad to ER or something. But please don’t let this go. You will make all of us feel better. So if for no other reason (like you need any reason other then your papa!) you can appease all of us worry warts!

Patti

[patti]

Jen,

If that were my dad I would be calling the doc ASAP. Either request a lower dose or get him off of it completely. I realize he had blood clots in his lungs so they are a continued concern. What I do know about coumadin is that you have to very carefully watch the dosing – especially in the beginning. It sounds like his dosing is too high. We had some of the same issues with my dad when he started taking it.

His platelets are pretty low to be on coumadin. I insert my prejudice here that I don’t think anyone should be on that stuff. That said, there are other alternatives to coumadin. If your dad needs his blood thinned he can eat/take garlic and onions, etc. BUT not at the same time as coumadin! If he’s eating these things in any quantity while he’s on the coumadin that is also going to cause problems.

HTH

patti

[patti]

Campbell,

I am so sorry. I can’t imagine losing my husband – I am sorry you’re losing yours. My MIL was on hospice care for ten days before she died and those ten days were some of the most difficult of my life – but I wouldn’t change that time with her for anything. While this time will be so hard, be with him when you can. You will never regret it.

God bless you during this time.

patti

[patti]

June,

The ferritin level is tested via blood test. Mom used to get hers checked monthly or every other month once she go to about 2000. They would just draw it at the same time they drew her CBC.

Patti

[patti]

Teresa,

My husband and I just looked at moving to Worland! I’ll have to PM you to ask some questions.

A lot depends on what type of MDS your mom has. Is she RA, RAEB, etc.? My MIL went 2.5yrs getting tx every 2-3 weeks. She had all 3 cell lines affected and quit using neupogen about 8 weeks ago because it had stopped working. She had also been on it twice a week.

It will be easier to be more specific if we know what type of MDS she has. What cell lines are affected?

I understand what you mean about wanting to know what’s coming down the pike. I was the same way and had a hard time getting anyone to answer (one person did privately). I do better knowing what the possibilities are then I do going blindly into something.

I can share more if you can throw in some more info.

Patti

[patti]

J.Claire,

You NEED to get a CBC done. It doesn’t matter if they told you to go four months. If you call and tell them you are getting blood blisters in your mouth (even if they are coming and going – mom’s did that) and you think your platelets might need to be checked they will check you. I would really encourage you to be proactive with this one. It may be worse with your cycle, but it shouldn’t be happening at all so it’s worth finding out where you’re at. Platelets die off at a rate of 10K-15K a day in the average person. If your body is all of a sudden having a hard time producing them it won’t be long before you are very low. Please reconsider getting this checked.

Patti

[patti]

June,

Like Dick, mom had a ton of transfusions. At last count I think it was 74. That’s just blood. She had 30+ platelet tranfusions since Aug. 06.

The Exjade actually works very well. The only caution I would have (which really doesn’t apply to you at the moment) is that if someone has low white cells it can cause them to fall a little further. We had to take mom off of the Exjade because she already had too few white cells and it made hers drop into the 400 neutrophil range when she was on it. Otherwise, I think it’s worth using. I would hold out taking it though until the iron level at at least 1500 or 2000 and I would make sure that he goes off of it when his ferritin gets down to 500. At the lower numbers hearing loss can happen if you’re not really careful. Also, read other posts regarding dosing. Do NOT let the doctors start him on 1200mg or more. Start at 250mg. and work your way up to 500 or 750. That should be enough to lower his ferritin without shocking his body by side effects.

Patti

[patti]

June,

All good questions. My MIL was tx dependent for 2.5yrs. At best she could go 3 weeks between tx and that was if the blood was very fresh (have no control over this) and came from what we used to call, “manly football players.” Otherwise, two weeks was it. With your dad’s hgb being in the 6’s you might find that two pints won’t last him long. When mom got in the 6’s she usually ended up getting 3 pints. With your dad being male (their counts need to be higher) he might have needed that 3rd pint.

Tylenol and benadryl are standard pre-meds but I would encourage him to avoid them unless he is seeing himself having reactions to the blood tx. Usually a reaction will be hives or chills. If that happens, then premeds are important as a reaction can actually hemolyze the blood and shorten the time between tx. Other then procrit and aranesp there are no other red cell EPO stimulators that I know of. I would not recommend trying to throw in GCSF to see if it will make the procrit work or work better.

As far as where to get transfusions, that’s up to your dad but it’s important that he rotate his veins so avoid scarring. If he uses a different vein each time and in opposite arms he should be able to transfuse for a long time. Mom ended up getting a picc because we didn’t quite rotate her veins correctly and she scarred too badly. Have him gently masssage the vein he used for a tranfusion that time for a couple days after getting blood to help keep scar tissue for forming too thickly.

On the nutrition side there are a few things you can try. First, have your dad eat lots of good, organic red meat. Any iron he gets from food is organic and is not held by the body. It’s different from the inorganic iron he gets from blood. Beets are another excellent blood food. I posted a beet juicing recipe that my MIL used to do daily. It would be good for him. I would make sure you are juicing 2-3 times a day at least. He will get his biggest help from that. Once a day will be enough to help his overall health but probably not enough to increase his reds. I have a friend who was juicing 13 times a day at one point to heal her disease (which she did heal BTW). That’s a lot. So I would go with a juice at each meal. It’s a lot of work, but worthwhile in the long run.

Hope this helps.

Patti

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