[marlene]

Hi Mary,

Well we just got back from doing a heavy metal challenge chelation session. John’s first 24 hour toxic urine test came back a little too good to be believed. So the doc wanted to make sure that John is not holding onto heavy metals. Hence the challenge. He gave him DMPS and EDTA today and now he needs to collect his urine again for 24 hours. We’ll know better after the 18th of October. We also found out that his testoterone is very low, as is his growth hormone. To add insult to injury, he thinks there’s some infection somewhere in his systems. And lastly, some labs came back indication hypercoagualtion of his blood. YIKES! This is a guy with 49K platelets. But then I was reading where a hidden infection can cause this.

I’m afraid to go back for the final review/result. I don’t think I can take any more “news”.

Anyways….thanks for asking and I will post when we get some solid results. BTW….we halted the Exjade for all these tests.

Marlene

[marlene]

Suzie,

I don’t know anything about Dacogen but I can tell you that John was not put into isolation even when he had no white count. He went 84 day without one. He was in and out of the hospital for other issues but never isolation. He has his own room, but was allowed visitors and was expected to walk the halls for exercise.

So I would question why his doc thinks he need an undetermined length in isolation.

[marlene]

You might want to consider starting with a lower dose and working up to full dose to minimize side effects. 30mg/kg body weight is the higher end of the dosing. I think more is excreted in the feces. Desferral excreted via the Kidneys more. John notices a orange hue to stools. Where as when he was on desferral, his urine was orange.

[marlene]

Hmmmmm…I don’t think we were told to do so only because I had read about Desferral and Exjade before we talked our doc about it and I went ahead and set up John’s appointments on my own. He had them checked prior to starting Desferral and then again before he switched to Exjade. Since he’s on a lower dose, I think there’s less of a chance that it will effect his hearing/eyes. Also, I think it’s more of an issue if you continue with chelation therapy when your iron store are low…like an FE below 500.

I think it’s a good idea to have a baseline done before starting.

Marlene

[marlene]

Hi Jack,

John had surgery last year with low platelets. His were 36 at the time and they did transfuse one unit. Which probably brought him up to where you are at around 80 K. They started it before the surgery. Normally, if you have 50K, they say you can have surgery and not need a transfusion. They should check your clotting time also. After surgery, they had to give John PRBCs. His HGB was 8.5 but the doc was concerned since John had some blood in his vomit and the doc did not want to take any chances. John, as usual, gets very nauseated from pain meds.

So even if they don’t think they need to transfuse you, I would ask them to have some on hand just in case. Both platelets and red cells.

Best of luck with the surgeon.

Marlene

[marlene]

John’s FE jumps around also. He was 1565 in May and then 2058 in Aug. Our doc at Hopkins says it will continue to jump around until it get closer to 1000. He also said to start looking at the Saturation levels and Iron Binding capacity once you get below 1500. FE is very unreliable as to how much iron you really have….all you know is that you have a lot to get a FE reading that high. And once you have too much iron, everything can cause your FE results to rise…if they leave the rubber band on your arm too long, FE reading will be off; if you have recently injured yourself, FE reading will be off; how they handle the blood specimin can throw it off also.

Very frustrating.

Marlene

[marlene]

Hi Mary,

Thanks so much. That’s very interesting. John did High Dose Cytoxan for SAA in June 2002. It really did him in. There’s not one body system/organ that was not effected. So after five years, he’s in a partial remission and we continue to see his blood counts creep up ever so slowly. So he’s on a low dose of Exjade to get rid of the iron. His FE is around 1800 now. Down from 4600. It’s troublesome for his tummy though and he has to stop it from time to time.

So we’re going to see this doctor who’s going to assess John’s overall health to see where his imbalances are and correct them if possible. So if we can restore hormonal balance, get rid of heavy metals, etc, to improve his overall health.

John said he doesn’t remember what it feels like to be normal anymore. He’s made great progress over the past five years and this doc will look beyond the SAA and age in this asssessment. Too many times docs attribute everything to the AA and we all know you can have more than one thing wrong with you. They intimate ” well at least you’re alive”. That is true and we are grateful for that; but that doesn’t mean we should stop trying to achieve optimal health.

Thanks again for sharing the experience.

Marlene

[marlene]

Hi Mary,

That makes sense stopping the Exjade for now to see if it helps. And it seems like everything effects the bone marrow.

Good luck….Marlene

[marlene]

Mary and Shellbivens,

Do they monitor your kidneys closely when they did the chelation and also replace any other minerals that are lost?

I have read about an oral chelation that’s supposed to be less expensive. I worry about John’s veins getting poked. They have been so used over the last five years. I’m not sure he would even agree to 30 IV therapies.

When Mike did it for high mercury, why did it wipe him out?

Thanks…..Marlene

[marlene]

Have you considered that maybe it’s the Exjade causing the drop in counts verus the Revlimid not working. I say this because the post marketing data on Exjade states that there have been reports of cytopenias, including neutropenia and thrombocytopenia, in patients treated with Exjade. Of course they state that “most” of these patients had preexisting blood disorders.

Just something to consider.

Marlene

[marlene]

Hi Mary,

John is going to be seeing a doc next month who will be checking him for heavy metals also. So it will be interesting to see if he wants him to do IV chelation. John is on Exjade also and I too would be concerned about adverse reactions between the two. Please keep us posted on what you end up doing.

Marlene

[marlene]

Hi Linda,

I guess I’m confused as to why they have stopped giving platelet transfusion. So I’ll just thow out a couple of thoughts/considerations.

1 – If she had a fever during this time, the fever will use up the platelets. So she may not be refractory.

2 – She may need them to do a “match” platelet product versus getting whatever is on the shelf. You can call a blood bank/service and ask to talk to someone about platelet products. When John was in Hopkins, they worked really hard to get him platelets that would work for him. When we came home, we found that some platelets worked really well and other did not. Another person we know with AA actually was not getting any bumps from her transfusions. So she asked found 8 people (friends/family) who’s platelets were more compatible for her based on the matching. They became her personal donors for platelets.

3 – Are her blood products being filtered and irradiated? They should be as fresh as possible. You really don’t want a bag that is going to expire that day. Your doc can write orders requesting that.

4 – Even when John’s platelets were at 5 – 8K, he would stop bleeding within 15 minutes on small cuts etc. Many can tolerate 5K. We would use Knox geletin to assist his clotting. I would mix some up with juice for him to drink. It has clotting factors which helped him with bleeding gums. Green leafy vegetable have vitamin K which is needed by the liver for clotting.

5 – Finally, they should check her clotting times. You need to have more than platelets for your blood to clot.

Marlene

[marlene]

Hi Frankie…..A 9.4 HGB would be too low for phlebotomy. John had to be at 10.

Take care,
Marlene

[marlene]

Hi Frankie,

Couple of things….If your Hemaglobin is at or near normal, you may want to consider theraputic phlebotomies. I know it sounds counter-intuitive but if you’re able make up the difference, phlebotomies are a an option. You can start with removing just 250 cc of blood each month to see how you do. John did them when his HGB was 10 -11. He was doing them monthly because Exjade wasn’t out yet and the desferral was problematic for him. It got to be too much for him after about a year so he went on Exjade when it came on the market. His HGB is holding around 10.5 – 10.8. Again, this all depends on what’s happening with your HGB. Our doc said one month of Exjade is as effective as removing one unit of blood.

And yes…..drug stores cannot fill this prescription. We have to go through Acredo and it’s mail order. You must be home to sign for it. It’s very expensive if you don’t have a good prescrip coverage insurance.

If you decide to do Exjade, my personal opinion is that you do not need to be on the full dose since you are no longer transfusion dependent, are on Revlimid and your Ferritin is only 1500. A lower dose will bring down your ferritin and at the same time, minimize side effects. John started with 500mg and is now up to 750 mg. This about one half the standard prescribed dose. Many of the side effects are dose related.

Before starting, your doc should have checked your kidney and liver function via a chem panel blood test. He should then do weekly blood test for at least the first month to make sure you do not have any kidney/liver issues from the Exjade and also, make sure it’s not effecting you white blood cells. And then maybe go to two weeks then monthly.

Marlene

[marlene]

FYI…..Here’s a post marketing update on Exjade. It’s pretty much stating what most of us already know about serious side effects….it’s now official.

Revised Warnings and Adverse Reactions Sections for Exjade

5/23/2007
Novartis is notifying health care professionals of changes to the Warnings and Adverse Reactions sections of the product labeling for Exjade (deferasirox), a drug indicated for the treatment of chronic iron overload due to blood transfusions (transfusional hemosiderosis) in patients 2 years of age and older. Acute renal failure (in some cases fatal) has been reported after the postmarketing use of Exjade. Most fatalities occurred in patients who had multiple comorbidities and were in advanced stages of their hematological disorders. There have also been postmarketing reports of cytopenias (some fatal), including agranulocytosis, neutropenia, and thrombocytopenia in Exjade-treated patients. However, their correlation to Exjade treatment is unknown. Most of these patients had preexisting hematological disorders often associated with bone marrow failure. Cases of leukocytoclastic vasculitis, urticaria, and hypersensitivity reactions (including anaphylaxis and angioedema) were also reported. Health care professionals should monitor serum creatinine in patients who have an increased risk of complications, have preexisting renal problems, have comorbid conditions, are elderly, or are receiving medicinal products that depress renal function. Blood counts should be regularly monitored and treatment interrupted in patients who develop unexplained cytopenia.

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