[patti]

Dick,

It does not sound like the Exjade is working. My MIL was transfusing two units every two weeks and only taking 250mg – 500mg of Exjade and she was dropping her ferritin 250pts (I don’t know what the measurement is) a month. That’s with 4 units of blood going into her.

Are you taking any sort of calcium/magnesium supplement with or close to your Exjade? That could render it useless. Otherwise, this drug does not appear to be working and it’s not good to stay on something that isn’t working. That’s an awful lot of Exjade. As undesireable as it is, you might want to consider trying desferal daily or even just 3 or 4 times a week without the Exjade and see if you start seeing a drop. I have a friend who only used desferal 3x’s a week (was supposed to be 7) but managed to drop her iron by 1000 even while getting transfusions.

Also, this is certainly something to talk to the drug company about. Since Exjade is so new they still don’t have a lot of data on it but it would be interesting to find out if anyone in their trials also didn’t have it work for them and what Novartis says about it. My MIL no longer takes Exjade as we found it to be dropping her white cells too much. We and the doctor talked to Novartis because others are seeing this also. They are now gathering info on it.

Patti

[patti]

Karen,

With all do respect, what should they do? More research dollars? Honestly, research is controlled entirely by drug companies with a desire only to make money, not really “cure” anything. If they cure it, who will buy the drugs?

I’m sorry, maybe I’m cynical, but it is not the job of a nanny government to take care of every single need people have. I guess I just see lobbying for any kind of cancer research (breast, leukemia, etc) as nothing more then begging nanny to take away a disease it does not have the power to do. I think if private individuals want to donate to the organizations like the MDS or leukemia foundation, then great. Hopefully those dollars are going to research. But realistically, everyone has their hand out these days. They want paid family leave, they want social security so they don’t have to plan for retirement, they want free lunches so they don’t have to be responsible for their kids, they want cancer research so they don’t have to deal with disease. At what point do the tax dollars stop? Would it not be better to give the people more of their money back to do with as they please? Including donate as much as they want to cancer research?

I’m sorry. I just cannot stand the thought of the government getting involved in anymore of anything. The drug companies and medical schools are running the show that way anyway.

Maybe it’s just late, and maybe I’m just too tired from taking care of mom at the moment, but I don’t get it.

Patti

[patti]

Jim,

I wasn’t implying one shouldn’t get transfusions. It’s just that you stated they are “very safe” and I think it’s prudent that people understand there are risks involved – however small they might be. We were never told there was a risk of infection from the blood itself. I learned it only from this forum. Just passing on info I think people should have in the event they should need it. It’s just always good to have all the info one can have. I least I prefer that.

Patti

[patti]

Jim, et al,

Hate to burst bubbles here, but it’s very precarious to say, “the blood itself is safe except….” They are unable to screen for multitudes of diseases and another person on this forum died from an infection he got from a blood transfusion. So, be wise.

Josey, it sounds like you need blood. I would recommend you do not force yourself to wait until you are too low to ask for a tx. This just causes more damage to the organs and brain by getting them that much less oxygen. After 2 1/2 yrs of this my MIL has zero short term memory from repeated lack of oxygen. It’s best to transfuse as soon as you start to have symptoms of feeling low. That would be the heart beating sound in your ears, fatigue, etc. Also, ALWAYS get irradiated blood. I believe this is one of the best pieces of advice given to us in the beginning. And we also believe it is why mom was able to go so long on transfusions without becoming resistant to them. This goes for blood AND platelets. Especially platelets since one can become refractory to them. Mom has had 30+ platelet transfusions and so far, is still able to hold them. Her doctor and I both believe this is because of the irradiation.

Patti

[patti]

Bety,

I had not heard that prophylactic antibiotics lower white count. That doesn’t sound right to me. But at this point, it wouldn’t matter, my MIL has zero whites anyway. At this moment she is at home fighting fevers left and right inspite of being on both Bactrum DS and Levaquin. For her, it is only a matter of days probably before her body gives out to the infections.

Yes, acyclvar can help viral infections but if someone’s whites are so low they are riddled with infection throughout their body, nothing they take will help. It depends on how high the white cell count is.

Patti

[patti]

Jim,

I think, if I had a doctor like yours I would be finding me another one. This is coming from the person who went through 3 doctors for my MIL before I found one I felt like would listen, would not patronize and would do what we wanted even if conventional medicine said not to. When you have a doctor that doesn’t answer questions and isn’t monitoring things for you they just aren’t doing their job. My feeling is this guy must not have much experience with MDS.

There is some controversy about when iron causes damage to the organs. From everything I’ve read it is most damaging to the very young and very old. My MIL falls into that category. We waited a very long time (she was well over 2500)because we kept hearing on this board that it takes years for iron to do its damage. I did check with mom’s doc on this and she said there seems to be this age range where it takes longer for the damage to occur. Somewhere between late teens and the sixties. She said before and after that damage seems to happen quicker. Don’t know if that’s any help.

Do keep us posted on what you do and how it works because the expreriences we pass on here will help everyone in the long run.

all the best,

patti

[patti]

Russ,

Mom was on Levaquin after she left the hospital and they didn’t want to keep her on it because they said they try to reserve that for major infections since it’s one of the better ones. She’s on Bactrum Double Strength right now. It seems like it’s just barely keeping her temp in check. On the days she doesn’t take it her temp starts to rise again.

I’m not sure how we’d feel about the anti-viral/anti-fungal. She takes a lot of natural anti-fungal stuff right now but the anti-viral might be something to consider. I’ll research it and see what I find out. Yep, we’re also just aiming for QOL right now also. I told her the other day she should probably wear a mask when going out in public but she was adamantly opposed to it. At this point, her comfort is probably more important then how fast she’s gets an infection.

Thanks for the prayers. Praying all goes well with you too.

Patti

[patti]

Hi Jim,

You’ve given me tall orders here to try and keep this all straight for you.

First, Exjade works very well. I think using some common sense precautions will make your life easier (unless you have to fight with a doctor over this). I would recommend you start at 250mg and do that for 4 weeks. Then go to 500mg. We found that the Exjade worked just fine at 250mg – although slow – but we didn’t care. It was working. At 500mg it felt like it was working at lightening speed. And that was with mom transfusing every 2-3 weeks. Mom’s doc wanted her to start at 1200mg which we thought was nuts sense no one knew how she would respond to it. One person on this forum started there and ended up in the hospital with the dehydration from diarrhea. So, be careful about how high you start. We just flat out told the doctor what we would do and didn’t care what they thought. They still gave us 1200mg worth for the month and mom just took what we had decided on. We were satisfied with the rate of drop in ferritin at 500mg and that would be my recommendation of a good place to stay if it works for you. If it doesn’t (since everyone is different) then it would be wise to only go up in 250mg increments. This gives your body time to adjust to it and should avoid any adverse side effects.

Mom did develop a rash around her mid section after being on it for two weeks. We stopped the Exjade for two weeks and went back on it slowly and she didn’t have any trouble with it after that.

If you’re white cells are not affected by your MDS then this next stuff may not apply – but tuck it away just in case. Mom had very few white cells to begin with. We did notice that on 250mg of Exjade her total white cell count dropped 200pts. That drop affected her neutrophils totally. They also dropped 200. On 500mg her white cell count dropped 400pts. Same thing – it was all neutrophil drop. So, that said, it *may* drop your white cells some. You’ll just have to watch this and see.

We cannot definatively say it was the Exjade that dropped her whites but when she went off of it her whites would come back up to their “normal” level (which was about 1200). Her neuts ran around 800 normally so you can see where a drop of 400 could be significant for her. We stopped and started the Exjade multiple times over 6 or 8 months (can’t remember exactly right now) to test out different things. In the end, we stopped the Exjade because her whites became critical. We could no longer afford to lose any of them. But they have never recovered. She now has 800 total white cells and they are all lymphocytes. She has no neutrophils, etc. She has been this way for over a month now. Already had one stint in the hospital for an unknown infection and she’s now on prophylactic antibiotics 3 times a week in an attempt to stave off any bacterial infection. If she gets something viral there will be nothing we can do about it. Right now her ferritin is 3600 and we are not worrying about it because we have bigger fish to fry now. I am somewhat of the opinion that the Exjade caused some damage to her white cells that we could not undo. But there’s nothing scientific about that – just looking at clinical data. It’s possible it was just natural disease progression also. It’s just that prior to that she was holding and doing okay.

Hope this helps some. I would recommend once your ferritin hits 1000 that you stop the Exjade until your iron goes back up again. I think anytime you are on a drug you run the potential of causing damage elsewhere.

Oh – you asked about the mung beans, etc. Mom continued to take the mung beans, and jujubees and still is. I will say her ferritin isn’t rising as fast as one would expect since she stopped doing the Exjade. Have no clinical data to prove these are helping. Just that she’s still taking them. She now boils the jujubees into a tea for 5 minutes or so and drinks the tea and eats the softened jujubees. This seems to be better for her since she’s older.

Feel free to pick my brain if you think of any other questions.

patti

[patti]

Russ,

Ah – the roller coaster…. She has done a 360 and is doing much much better. Basically back to where we were a few months ago. Platelets weekly and blood every 2-3. It took her about two weeks to recover from being in the hospital for 24hrs, but she did. We didn’t think she was going to she was doing so poorly. She is definately weaker – no question about that. But doing okay. Feels like she can cook meals again. We are no longer running 24hr care shifts for her.

The biggest issue we are fighting at this point is she has zero neutrophils and only 800 total white cells. All of her white cells are lymphyocytes. She’s on a prophylactic antibiotic 3x’s a week hoping to hold off any bacterial infection. But if she gets something viral they’ll be nothing we can do. Her neutrophils have been at zero for over a month now.

Thanks for praying…. sorry about not updating you sooner. It’s been a little crazy.

Patti

[patti]

Sandhya,

Unfortunately, the new norm for your dad may be platelet transfusion dependency. My MIL has to get platelets every week. By the time the next week rolls around she’s down to 2000-4000 platelets. She’s had 30 platelet transfusions so far and we know she can become refractory at anytime.

If your dad chooses to do the Vidaza or dacogen be aware that they will have to support him with frequent platelet transfusions (perhaps several times a week) until those drugs kick in and start to work. Then hopefully they would raise his platelets.

The mouth sores he is experiencing is not unusual for someone with low platelets. Usually once a person gets a platelet transfusion those sores will go away until their platelets drop again. I know for my MIL we can literally watch hers go away as she’s getting the platelets. If they are too big (sometimes she gets them the size of a quarter) they will take a couple of days to get better. Unfortunately, the mouth sores come with the territory of low platelets.

Patti

[patti]

Fran,

Generally, when you start feeling your heartbeat in your head or your ears feeling funny it’s a good time to get a blood tx. That usually is a good signal your a little too low. That frequently is the only sign my MIL has that she’s low and needs blood because she can function with a pretty low hgb.

patti

[patti]

Alice,

Whatever you do I would push back against them giving her a double dose of this stuff. My MIL took it for 9 months and had zero improvement. It just wasn’t going to help my MIL. But in that 9 months we fully believe in increased her disease. She went from tranfusing every 12 weeks to every 2-3 weeks. That’s a signficant change. My MIL’s NP believes that the procrit (exprex for you) increased her disease rapidly and when we stopped the procrit the disease progression slowed down. I think procrit has a place if it works for folks but if it hasn’t worked for your mom yet it’s not likely too. And if it’s not working on her cells, it’s likely working against them (making them more leukemic in the long run). JMHO

patti

[patti]

Janey,

You might try making high calorie, nutrient dense smoothies that he could drink/eat with a straw or a spoon (if you make them thick enough). You could try using an organic, low sugar, full fatted ice cream, frozen berries, little organic whole milk, banana, and two or three scoops of whey protein. Blend for just a second in a blender. You can make it as thick or thin as you like. Sometimes sucking something thru a straw makes it easier for folks to eat. You can also use organic full fatted yogurt instead of ice cream. The whey protein will help prevent muscle wasting, but it’s not likely he’d drink it plain so you’d need to mix it with something like the smoothie.

My MIL’s appetite has diminished greatly just from being so tired from the anemia. If you’re dad is overtired because of that you just have to work to make sure what he eats is full of calories and nutrients and not empty calories (jello, etc).

HTH

patti

[patti]

Sandy,

Because Mike has AML his protocol is likely to be vastly different because AML is usually aggressive. Instead of doing it a week on and 3 weeks off they are doing it the way you described. Perhaps that’s because they believe Mike shouldn’t be 3 weeks without something going in to try and knock out the blasts. Also, this would probably account for the lower doses given each time. It looks like they might be giving smaller doses more frequently rather then larger doses every 3 or 4 weeks. It’s definately worth asking his doctors to explain so you understand. It seems like for MDS patients it takes approx. 3-4 rounds before they start responding. But Mike has AML which is a whole new ballgame. Might respond sooner since he gets it more often, might be later. Again, another good question for his docs.

Hang in there,

patti

[patti]

Chuck,

I am so excited to hear of the success your having with juicing! I really believe that God has given us everything we need to heal our bodies. It’s just most of us are too impatient to do it and wait for the results! But for now, how fantastic that you feel well. I know that my MIL really felt well until just this past few months. I attribute a lot of that to her juicing.

Take care,

patti

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