My brother in law has this as well as his brother. I know it runs in families but I don't know that is a side effect of the treatment we go through. I doubt it would be related to the transfusions because you haven't had a stem cell transplant and the marrow produces the blood cells, but who knows. Did you ever have it checked before? Maybe you always had it.

Hi Julie,
I just joined the site. I had ferritin level of 2300 after induction chemo and 6 consolidation treatments. My Dr at MD Anderson was not concerned. He said they would do chelation to remove iron if the level gets to 10,000. The levels are from the iron in the blood transfusions. I wouldn't worry about it. It will slowly go down over time once you no longer need transfusions.

Julie --
I have known others who have had elevated iron -- it seems like the body cannot get rid of it for some reason when it is brought in by transfusions -- which does seem strange but that is what I have heard. I am sure that your med team has faced this type of thing before since it is well documented. I doubt this has much at all to do with your platelets -- mine got up to 150 after about five years -- they have been well below this to the point I gave up thinking they would get to normal -- but 150 is the bottom of the normal, and 149 is no real difference, so I would not worry about that. Please let us know what they decide on the ferritin. We are praying for you and all of the victims and survivors on this list -- daveB

Yes, they just checked Tony's in July too, he was high, 1600, norm 500, docs said this is expected/ normal after how many blood transfusions he had received, (induction, 4 consolidation rounds, relapse re-induction, and SCT) that's a lot of chemo and a lot of blood products
It's just iron build up that is hard for the body to rid of, no worries at the levels you or he are at. They'd actually take some blood out of you if was around 7-10k I think.
Trust me, lol, I've looked into it!!!

Lea, you are always a wealth of information. I like to see your posts because you explain things well. Thanks to Julie's question and your answer, this will be something I won't have to worry about when/if it happens to my sister! :) I'm glad Tony is doing so well!

Debbie

Julie,

Don't worry. Ferritin is a storage form of iron. Actually, it will go down with time. Your level is not astronomical at all. I am sure that your doctor checked your liver function tests, since excess iron can cause some liver damage. The elevated ferritin is probably a result of the numerous transfusions and the inflammatory process that goes along with treatment for AML. My ferritin was never too high, because I required very few transfusions.

If your liver tests are good, I would simply watch the number. You don't need to have phlebotomy or chelation therapy. Also, I am not worried about your platelets. Even before I got sick (for my whole life) my platelets were often in that range. They very greatly. A few months ago, they were 168. Two weeks ago, they were 215. DO NOT FOCUS ON EVERY NUMBER> You are fine.

Cliff

Cliff -- great to see you back on the list. Actually selfish on my part -- your advice is priceless and you are the only MD that we have. I know everyone is rejoicing at your return -- it has been a while -- time flies. Take care and thanks for the kind words -- daveB

Mine is being treated and my docs dx as secondary hemochromatosis.

They way mine went:
My original oncologist (now current hematologist) was going to schedule things once my counts normalized as I was at fe 2.3k post induction and 4 consolidations. I relapsed before I stabilized my counts. My BMT was 2.5 years ago, they finally got all of my wacky blood issues to stabilize over the last year . They started to phlebotomize me in July to start lowering my levels, as it is easier to deal with than the nasty Exjade side effects. My fe was about 4k after transplant - it did drop some on its own - my Hematologist said it was because I finally made my own blood and a lot of my gvhd had calmed down so the inflammation was lower. My liver iron concentration by MRI was also high (as well as my slpeen, bone marrow, and the like it was a lot of places on the report) so it was phlebotomy for me

I go in once a month they take out 400 mL, give me 500 mL of saline - see one of my chemo nurses -- drink my apple juice - eat my cookie and go back to work.

I do also have primary hemochromatosis in my family -- my docs haven't done the genetic test on me yet for the primary version as the treatment is the same and they are waiting for my mum's testing to come back. Two of her sisters are/were positive.

Mon -- have not seen you before on the forum but perhaps I just have not been looking in the right place. Anyway, if this is your first post, welcome aboard; if not, excuse my ignorance ... after all, I am 72. (I use that as an excuse a lot and most people buy it.)

Anyway, GREAT posts and very informative -- I am sure that Julie and others who are suffering from this same thing appreciate it.

Take care and realize you have many people who are now praying for you. -- daveB

Thank you dreamer,

I have missed hearing from you and pray you are doing well. The treatment you describe is exactly the scenerio my med team discussed this week.

The high ferritin is caused from all of the transfusions I recieved. My med team as a formula they use based on the number of transfusions and the time since last transfusion. If the numbers are high, I will have an mRI of my liver to check for excess liver stores. This can cause permanent liver damage. If the stores are too high, then I will have blood drawn over a period of months to bring my numbers down.

It seems ironic to potentially need blood removed. I'm not concerned because as usual my med team is all over it.

Guys,

Hemochromatosis, whether primary or secondary, is not difficult to treat, and those of you with very high ferritins cannot be hurt by having an MRI to assess the liver (the MR signal changes when there is a high amount of iron stored in the liver). For those of you with iron levels less than 2000 or so, who are not receiving any transfusions anymore, the level will slowly drop. Personally, I would do nothing about it, assuming the scan isn't of concern. We used to biopsy everyone with presumed hemochromatosis, but the scans have supplanted this to a large extent.

Mon,
With the family history, I can't imagine that it would be a waste to do genetic testing, because the results will let you know whether you will need periodic phlebotomies forever, or whether the condition will ultimately resolve. You are right that GvHD will increase ferritin, because as I wrote before, any chronic inflammatory disease can cause iron to be deposited in storage form, unavailable for body use.

I think you are on the right track, and yes, intermittent phlebotomy is no big deal.

Cliff

Dear All,

So I finally have a treatment plan for my high ferritin. As a reminder, my ferritin is 1700 with 400 being high normal. My med team's protocol casks for a liver mRI of ferritin is over 1000. Friday I had the mri and high risk levels of iron stores in the liver is anything above 1100. Mine is 1190. I am scheduled to begin phlebotomies in Jan every two weeks for about six months. This is truly something we should all have checked as I had no symptoms. This can lead to psoriasis and cancer of the liver. Please get your ferritin checked just to be sure. Unless you are menstruating or donating blood your iron levels will not go down.

http://www.niddk.nih.gov/health-information/health-topics/liver-disease/hemochromatosis/Pages/facts.aspx#top

Blessings
Julie

Julie,

I don't want you to think twice about your phlebotomies. Since you do not have hemochromatosis (the genetic kind), it will not be long until your ferritin comes down. I was lucky to not have had many transfusions, and I actually have no idea what my ferritin is at the moment. They stopped checking it.

YOU ARE NOT GOING TO GET CANCER OF THE LIVER. So put that out of your mind. Do not read about excess iron in the body. It will soon be gone. Your advice to others is wise, especially if they have had a lot of transfusions.

Make sure you drink a lot after they take out the blood. You will feel thirsty. Otherwise, you might just be a bit tired. When I had my recent back surgery, I lost about 700 cc of blood...more than a unit. I felt tired, but not at all ill otherwise. It's just like getting a phlebotomy.....the hard way! Be well. You are a bright light.

XO,

Cliff

Hi Julie and Everyone,

Jack has ultra high ferritin levels also and is currently on a chelating agent. The stuff apparently is expensive and his insurance denied it for almost a month. Just an update, he goes in once every two weeks for a dressing change and blood work. He hasn't needed transfusions for a while ....maybe a month but blood work isn't great... Hg around 9.8 and platelets in mid 20s, but boy am I glad he's home. These past two weeks he's dealing with GVH symptoms and had diarrhea straight for three days. Lost 15 pounds but it's good because he gained about 25 from being swollen. From all the edema, he had to double his hypertension meds and is currently on insulin also because his sugars have been crazy high. After the few days on diarrhea, his BP went back to normal and the sugars are better. He's tired and weak with low endurance these past two weeks. He's home and we are just thankful for that. His co-workers brought a ton of presents for his kids this year although he hasn't worked in two years now. It was the first week of December 2013 when he went into the ER and got the dx.

Does anyone have insight on GVH?

I apologize for not being around. Mom purchased a house closer to me but my husband and I have had to gut the house and this remodel has been a nightmare. It's been two steps forward and one step back from my own mistakes. It's costing a lot of money and a ton of stress since we are paying for the remodel. To top it off, I fell from running ...sprained my ankle twice and inadvertantly had second degree burns with clove oil to treat my sprained ankle-only half way recovered from the burns. What a busy past few months.

I am glad to hear and read all the comments and discussions and all the encouraging comments and remarks. May God Bless all of you this year!