Chelation - How much and when?

[LizR]

I'm really confused on chelation. They first checked Bob's ferritin in late May and it was 1225. Since then he has gotten 5 units PBRCs and had 2 desferal infusions of 500 and one of 250. His ferritin is now 1918 and another 500 is scheduled.

Is this normal? Is it possible to need desferal after every PBRC unit? I read the article in the MDS Beacon last week about transfusions and chelation and am now more confused than ever. He can't take Exjade as he is high-risk MDS.

Thanks!

[KMac]

Hi Liz,

My understanding is that desferal infusions usually need to be very frequent and administered over the long term to produce a significant drop in serum ferritin levels.

From January - June 2012 I required about 24 units of PRBC while waiting for my ATG/cyclosporine treatment to work on my AA. By April my ferritin was at about 3000 (and my iron levels started out normal in Jaunuary before my 1st transfusion, so I sure packed it on quickly). An intensive 6 week regimen of desferal iron chelation cut my ferritin down to about half that, even though I required an additional 4 units of PRBC during that time. I feel immensely lucky that I stopped needing transfusions and my blood started rising on it's own. My transfusion independence didn't come a moment too soon, as the desferal was beating up my kidneys (high GFR), and so my doctors wanted to stop it. My ferritin is still a bit high (about 900) but my doctor feels my Hgb is not quite high enough for the phlebotomies (I run in the 12-14 range), and under 1000 they tend not to treat the iron overload with medication. My body seems to be slowly removing the iron from my system as it makes blood again.

As to the desferal regimen, I was hooked up to a pump administering the desferal for 40 hours a week. If I recall correctly, I received at least 500 mg five nights a week (it might even have been 1000 mg, I forget), an 8 hour infusion each night. My hospital said the slow infusion would work best. Fortunately, my insurance covered a home healthcare service to delivery the pump and desferal to my house, so I didn't have to get my infusions in the hospital (probably much cheaper for the insurance company that way too).

[KMac]

...and to clarify, that was 500-1000 mg of desferal I would receive every night, so about 2500-5000 mg of desferal total each week.

So perhaps it would be good to ask if your husband could have a more frequent chelation regimen. I'm not a medical professional so of course that is just my layperson's thought.

One other thing about chelation, I don't think it is just you who is confused when researching it - I believe there are a variety of opinions among doctors and nurses as it it's efficacy, risks, and benefits. On of my doctors was very proactive in getting me on the intense desferal regimen. My other doctor told me he was afraid it wouldn't work very well, just beat up my kidneys, and he'd rather concentrate on treating the aplastic anemia. And these doctors are both excellent hematologists. In my case both doctors were correct on some level, the desferal worked very well but it did hit my kidneys, so I benefited from having both of their inputs in my treatment.

Like so many other aspects of these blood disorders, often the response of an individual patient to chelation treatment cannot be predicted. But since I'm sure you husband is having regular CBC and blood chemistry tests, I'd think you could try an intense desferal regimen, and monitor closely how he responds.

I wish you and Bob the best in your fight against MDS.

[KMac]

...Wow, I just checked my medical records. It turns out I was on 3000 mg of desferal every night, 5 nights a week, over 6 weeks. This is within the range of maximum daily dosages as shown below:

http://www.rxlist.com/desferal-drug/...ons-dosage.htm

So for me....

Initial feritin ~3000 + ~2 months time + 4 Units PRBC + 90,000 mg desferal = Feritin ~1500

And for Bob...

Initial feritin 1225 + ~2 months time + 5 Units PRBC + 750 mg desferal = Feritin 1918

...it seems I received 120 times more desferal than Bob received over roughly the same time period!

Of course there could be risks in such a large increase in dosage though.

[LizR]

Thanks so much for the great information! It's what we needed and definitely not something you can read just anywhere. That is a LOT of desferal but it did what it was supposed to do. His kidneys are good now so we have a little margin for treatment.

As you said, there seems to be a lot of debate over what treatment is needed. We see our Mayo Clinic Dr., an MDS specialist, toward the end of the month and we'll see what he says. He oversees the treatment plan for our local Dr. to administer and they don't always agree either.

Bob is still up in the air about transplant so we just want to do the right thing for now. We get new results next week so that will hopefully give us some direction.

Thanks again for the info and your good wishes. Please keep us in mind if you think of anything else. These posts are like a flashlight in the dark!

I hope you continue to do well!

[Marlene]

Liz,

John too did desferal. His dose was 1500mg, every night, for 5 days each week. We have the same understanding as Kevin that you have better results with a very slow infusion over multiple days. We knew a patient who did it 24hr/day every day.

John could only do it for three weeks and would then need to take a break because he became so nauseated from it.

[usaf1125]

Originally Posted by LizR

I'm really confused on chelation. They first checked Bob's ferritin in late May and it was 1225. Since then he has gotten 5 units PBRCs and had 2 desferal infusions of 500 and one of 250. His ferritin is now 1918 and another 500 is scheduled.

Is this normal? Is it possible to need desferal after every PBRC unit? I read the article in the MDS Beacon last week about transfusions and chelation and am now more confused than ever. He can't take Exjade as he is high-risk MDS.

Thanks!

I have had MDS since 2003. Have received 349 units of PRC. My iron level is off the charts, over 3000. Used to take Exjade, had to stop it upset my stomach. Not showing any reaction to the high iron level, my Doctor is not concerned about it. Every one is different. Don't know if this helps. Don't let it rule you, keep smilling, we can only hope. I'm 81 now, get 2 units every 2 to 3 weeks

[NLJabbari]

Question: What is the difference between a serum ferritin level and organ ferritin levels?

Chelation and ferritin levels is not something that had concerned me greatly in the past. My son's last serum ferritin level was taken back in Feb. 2013. It was around 600, but I didn't think much of it then since he currently is transfusion free.

Last week when we met with a BMT Dr. from Stanford for an initial consult. He advised us to make an appointment to see a Dr. in Oakland regarding Chelation via SQUID? He said it specifically targets Iron stores in the organs and optimizes organ function. I mentioned my son's Serum levels and he said something to the effect that Iron stores (levels) in the organs differ. Hmmm, this got me thinking. He also said, that even though he doesn't recommend BMT for my son yet, he advised us that should it come to BMT; he wouldn't take him as a patient until he had at least 6 months of chelation.

This is all new to me...

Has anyone had experience with chelation via SQUID?

[usaf1125]

Sorry can't help. Never heard of SQUID. My iron level has been over 3000 for the last 4 or 5 years, with so far, no problems. My CRT level is the only number that I really watch Under 29, 2 units PRC,under 27 3 units..

[LizR]

I asked earlier about chelation and the different amounts of treatment and attitudes doctors have about it. Bob is now doing a day of chelation (1000) every week but his local dr. said we could try exjade if our insurance will cover it. I thought exjade wasn't used for high-risk MDS? We will see our Mayo Clinic dr. next week and ask as well.

Another issue is Bob has no spleen and that is where iron usually goes first. He had it removed 30 years ago due to an an unexplained rupture. His latest BMB (a separate post to follow later) showed ringed sideroblasts that weren't there before. Since sideroblasts have iron in them, could lack of chelation be the cause?

[Marlene]

From what I understand, SQUID is an imaging technique used to assess the amount of iron in liver tissue. It cannot measure tissue iron stores in other organs though. The other way to assess the liver is via a biopsy.

I have never heard of anyone being able to target chelation with it though. And I cannot imagine a doctor using a FE as low as 600 as a deciding factor in a BMT.

Serum ferritin is a protein that binds to free iron in the blood. This makes the iron "safe". The liver produces the protein. Excess iron will be stored in the organs...liver, spleen, heart, endocrine organs. This will, over time, negatively impact the organs.

http://www.ironhealthalliance.com/di...ment/squid.jsp

[NLJabbari]

I did a little more research on the SQUID and found this on AAMDS site

"SQUID (Superconducting Quantum Interference Device). This imaging test uses a very low-power magnetic field with very sensitive detectors to measure the presence of iron in your body with a high degree of accuracy. However, the complexity, cost, and technical requirements of this technology have limited its use for measuring iron. Only a handful of SQUID machines are available in the United States."

Not an actual chelator, but an imaging of Iron stores it seems.

Basically what the BMT Dr. (Specialty is Aplastic Anemia) was saying, is that since my son has received 23 units of RBC's, he should get chelation therapy for "optimal organ function". He then proceeded to say, "My patients get chelation for at least six months prior to BMT." I then proceeded to tell him that his ferritin level measured at around 500 on 02/13 (I was wrong, it was actually closer to 600 ) and even then he said that was irrelevant and that's when he recommended we go see Dr. Mark Walters @ Children's Oakland. It seems like this SQUID "Measures the presence of Iron" accurately, but not the actual levels. I'll have to talk to my son's hematologist to see what she recommends.

[winkryda]

Iron Overload in Myelodysplastic Syndromes:
Diagnosis and Management
Alan F. List, MD Cancer Control January 2010, Vol. 17, No. 1 Supplement A bit technical but you can pick something up.
End organ damage happens after Ferritin of 2000. Us high risk folks have such a poor prognosis that it is controversial whether to use chelation agents. I also can't use Exjade. Since I have a PICC line in I chose for Desferal iv 2000 mg 5 days a week via infusor, after I did a trial run of 1000 mg iv 5 days a week for 1 month and my Ferritin dropped 100. Chelation doesn't usually start till after 20-30 units RBCs. I started when my Ferritin was 1428 after 24 units. Hope this helps.

[LizR]

Winkryda -

Thanks for the article. Bob started Exjade last week after all. Although he is high-risk MDS, his platelets are the one line that stay relatively high. The Dr. said reducing the platelets is the main reason it's not recommended for high-risk. We are only a week in but no side-effects so far.

The Mayo specialist said once a week Desferal was of very little help and the pump wasn't realistic for him. When he started Exjade last week, his ferritin was 2577. That was with Desferal at least once a week.

Bob started chelation after 12 PBRC units. The fact that he had his spleen removed may have contributed to the high numbers. The admitted they didn't really know, they just speculate. They are watching his liver and kidney function to make sure they stay stable. Here's hoping he can continue the Exjade and it works!

[Mseth]

Originally Posted by usaf1125

I have had MDS since 2003. Have received 349 units of PRC. My iron level is off the charts, over 3000. Used to take Exjade, had to stop it upset my stomach. Not showing any reaction to the high iron level, my Doctor is not concerned about it. Every one is different. Don't know if this helps. Don't let it rule you, keep smilling, we can only hope. I'm 81 now, get 2 units every 2 to 3 weeks

Hello usaf1125,

Your post is encouraging. My mother will most likely follow the transfusion supportive care as well. Its good to know that you are managing well even without chelation, as I am concerned that she may not be able to tolerate the chelation drugs. She has had 16 units since dx, 2 units every 3-4 weeks.Any other information you can share will be appreciated.

Many thanks.

[Mseth]

Originally Posted by usaf1125

Sorry can't help. Never heard of SQUID. My iron level has been over 3000 for the last 4 or 5 years, with so far, no problems. My CRT level is the only number that I really watch Under 29, 2 units PRC,under 27 3 units..

Hello usaf1125.

Can you please help me understand what is 'CRT level' that you keep a watch on.

Thanks.