New Member

[Paul-in-WA]

Hello,
This is my first posting. I have high serum ferritin due to almost three years of transfusions every 2 or 3 weeks. Levels fluctuate around 5000 to 6000 lately. My underlying problem is anemia linked with a slow growing lymphoma. Chemo and drugs are keeping the lymphoma relatively under control but the docs can't figure out why I produce almost no red cells. But I digress. ... I am wondering how "bad" this level of ferritin is? I've developed severe erectile dysfunction and attribute it to iron buildup. The ED doesn't respond to the standard ED drugs. I've not had any imaging to look at the liver or heart for iron buildup and am wondering if I should. My oncologist seems to be more concerned about figuring out why I'm still needing transfusions than he is dealing with the iron overload. So I'm wondering if it's just that my iron overload is not really all that bad (yet?). I'm wondering if I should be getting chelation. At the time it might conflict with my ongoing cancer treatment (a brand new oral drug called Imbruvica). Just don't have the answers. ... I'd like to hear from others in similar circumstances. Bone marrow biopsies I've had say there is no evidence of MDS, but they don't rule it out 100%. They say I have "erythroid hypoplasia" which seems to me to be a fancy way of saying no red cell production.

Paul, age 52, in Washington State

[slip up 2]

Hi Paul......your iron level is high, some here have had higher....your erectile problem might be caused from your low RBC....your Dr should be made aware as you are a young man....and sex is important in life.....

You are close to the Fred Hutchinson Cancer Research Center in Seattle Wa...could you ask for a referral there.....

There is some info on erythroid hypoplasia on this forum one started Aug 21 2009.....if you go to the search and type that in it will come up....

Welcome to the forum......the folks here are kind & will help you in any way they can.....

kate

[riccd2001]

You should be very concerned Paul.

In general, most MDS patients who regularly have PRBC transfusions begin a chelation therapy after 20 units infused or serum ferritin above 1000 ug/L. I highly recommend you discuss beginning a suitable chelation therapy ASAP with your doc.

[KMac]

Paul,

I echo the sentiments of slip-up-2 and riccd2001; that you should be very concerned, and that you should do everything humanly possible to get yourself to Fred Hutchinson ASAP. I understand they are literally among the best on earth for treating difficult blood diseases.

When my serum ferritin went over 3000 after ~20 units of blood (happened within 3 months, I was extremely transfusion dependent there for a while), my doctors at CBCI (Colorado Blood Cancer Institute) had appointments set up for me to get organ imaging almost immediately. Further, the hospital staff worked with my insurance company to get me started on an intense chelation regimen (desferal), and found a home health care service to deliver the treatment to my door and train me in self-administering it. They did all this for me within a couple of weeks, not within years.

That was two years ago. My ferritin is down below 1000 now, and I've been far from needing any transfusions, I have my life back. I look back and realize how very lucky I was to be treated at such an excellent place, and wonder if I wouldn't have responded as well, if not for the high caliber of CBCI and my entire treatment team.

You are clearly asking all the right questions, I am so glad you made your way to Marrowforums.

I hope I am wrong in saying this, but I'm left with the fear that your current oncology team may not be competent in treating your illness. If they haven't figured out the root cause of your anemia at this point after three years, I fear they will not be figuring it out now or in the future either. Further, it seems inexcusable to me that they have allowed your iron levels to get to this point, and even now are still not recommending imaging or chelation. Your doctor just sits there year after year pumping you full of blood and scratching his/her head, without the wisdom and humility to refer you to a more experienced hematologist/oncologist? That strikes me as unconscionable and insane.

My disclaimer; of course, I am a patient, not a doctor. Perhaps I speak harshly out of turn. But I'm a patient who is tired of hearing about other folks with blood diseases not getting the treatment they need and deserve, when there really are excellent doctors and hospitals out there that can help us.

I wish you the very best in your fight.

[Marlene]

I too encourage you to get another opinion. Too much iron will affect the endocrine system, bone marrow and major organs. Unless there's a solid reason for not starting chelation therapy, I don't understand their approach.

A couple of things to consider.
1 - Have they talked about trying a red cell growth factor like Procrit?
2- Have they checked your blood serum EPO levels. EPO is produced by the kidneys and is you bodies way to stimulate red cell production. It is usually really high in those with anemia. If it's 500 or under, procrit could be effective for you.

3 - What nutritional elements have they checked? Vitamins B12, B6, Folate, D, zinc and copper, at a minimum, should be checked. They are key in blood production. Low normals or high levels of the B vitamins without supplementation are suspect.

I hope you pursue a second opinion. It's alway good to get another doctor's view point.

[Paul-in-WA]

Thanks for everyone's comments.

Marlene, Procrit does nothing for me. I've had B12 and folate checked. In 2010, my B12 was actually high (1288 pg/mL, ref range 180-914). That's interesting about the B. I wasn't supplementing B. But had just come out of six months of chemo, so am not sure whether that might have messed up metabolism. Folate was 4.4 ng/mL (ref > 3.0). Vit D fluctuates, in 2008 it was quite low but I take a supplement now. Never had zinc or copper tested. Could high B12 cause such severe anemia?

Anyone: I am wondering what type of chelation is the most effective? And could imaging (MRI or whatever) as a diagnostic tool potentially change the decision as to type of chelation one gets?

[Marlene]

Hi Paul,

Since I know nothing about your lymphoma or chemo, I hope you understand that what I share is based on our experience with SAA and after treatment collateral damage. You may have other issues I'm not aware of or familiar with that need to be taken into consideration.

The elevated B12 and folate can be a result of your body not being able to utilize it leading to falsely elevated blood serum levels. Figuring out why can be a challenge. Blood serum B12 is the least reliable test for b12 in order to identify a true deficiency. A better indication, but again, not conclusive is to have your homocysteine and MMA (methylmalonic acid) levels checked too. If elevated, there's a strong possibility of a B12 deficiency.

Some of the more current thinking is to look for defects or genetic mutations that deal with methylation. MTHFR defects can effect proper utilization of B12 and Folate. If you search MTHFR on this forum using the search tool above it will give about 8 or 10 threads where this is discussed. It's a very complex process and there's not a one size fits all approach to treating it. Sometimes it's just a matter of taking the proper bio-available forms of B12 and folate. Others have to play with tapering what they take and when. You can get tested for the mutations. I would suggest reading about as much as possible to see what resonates.

On another note.....John's testosterone took a big hit. He's now on bio-identical testosterone replacement. Have they checked your hormones? Restoring it can also help with red cell production.

Chelation

John's done all three approaches. Desferral, Exjade and phlebotomies. The last being the best approach but not possible in your case. Exjade is the easiest to take since it is oral but can have more side effects. Most prefer Exjade to Desferral since Desferral is a slow infusion over 8 hours. If you have a port or hickman, then its not so bad. But if you have to do the sub-Q, it's a real pain. Exjade is harder on the kidneys than deferral. With either drug, you should monitor kidney and liver function as well as your blood counts.

[Paul-in-WA]

Hi Marlene

Yes, I do understand you are sharing based on your own experience. I've been on a discussion group for lymphoma for seven years and am familiar with these sorts of interactions and information exchanges.

B12: I will talk with my doctor about those other tests homocysteine and MMA. My testosterone is okay according to my urologist.

Chelation: I scanned the prescribing information for Exjade and Desferal. Exjade is contraindicated with platelets below 50K. Mine are quite low, fluctuating between 40 and 50. Exjade is also an inhibitor of CYP3A, and my cancer drug prescribing information says CYP3A inhibitors increase exposure to it and the dose might have to be reduced if taking something that inhibits that enzyme. Those are both risk factors for the Exjade for me. Desferal: From browsing the prescribing info, it sounds like Desferal is more effective than Exjade, and that slow IV or slow subq pump are generally more effective than intramuscular shots, albeit a nuisance to deal with, is that right? I found it interesting that Vit C can make Desferal work better.

I can't find any solid information on Desferal's contraindications/interactions with respect to platelets or CYP3A. Does anyone know?

Paul in WA

PS Someone mentioned SCCA/Fred Hutch in Seattle. Yes, I do have a doctor there as well, a lymphoma/transplant specialist named Dave Maloney.

[Marlene]

It took long time to get an oral iron chelator that works but that came with some additional risk. It is more convenient and compliance is up with it.

The Exjade was harder on John than the Desferal. He eventually had to stop Exjade because it messed with his kidney. His platelets were at 23K when started it. There was no contraindication about platelets when was using it and it never messed with any of his counts. But that was the early days of Exjade before they had more data on it. And, he was no longer any other drugs.

I do think Desferal worked better but once he lost his hickman due to an infection, he chose not to get another. He did the sub-Q. That was not pleasant. The key is, as you stated, to infuse slowly over 8 - 12 hours for at least 3 consecutive days. John's schedule was M-F and off for the weekends. We knew someone who infused 7/24, a very aggressive approach. I don't recall any warnings about low blood counts or liver problems with Desferal. Desferal's exit path is the kidneys. Orange urine is a good thing.

Vitamin C.....From what I remember, it's not recommended to add in vitamin C until after being on deferral for one month. Vitamin C makes the iron more available for chelation and the dose is only 250 mg.

[Caregive]

I live in WA also and went to Fred Hutch in Seattle, Seattle Cancer Care Alliance actually, which is a coordinating effort of U of WA, Fred Hutch and a children's hospital. My husband saw Dr. Deeg who is I guess a top specialist in MDS. Your doctor has to refer you there I think. Do ask. We did.

Also, AAMDS.org is having a conference for patients and families on June 21 for those with MDS and other blood diseases. Go to the AAMDS site and you can sign up for free.

What part of WA do you live in? I wish you well.

[Paul-in-WA]

We're in Bellingham. Thanks for the tip about the conference. I'll check it out!

Paul in WA

born 1961
Diag 2007 lymphoplasmacytic lymphoma, multiple chemos and therapies. Currently taking Imbruvica.
Diag erythroid hypoplasia 2011, transfusion dependent ever since

[Caregive]

Paul, keep in contact. If you go, we can meet up there. I'm in Spokane. We have family in the Seattle area so go there several times a year. Also two grands went to school at Western.

[Paul-in-WA]

Hi Caregive, Thanks for the tip. Maybe we'll go to this conference. I have an appointment at SCCA. In the meantime, my local onc is saying he'd recommend Exjade as a first step. I'm okay with that, but I'm not wanting to start it until I see the specialist in Seattle. The oral cancer drug I'm on seems to have some potential contra-indications with chelation drugs. If I stop the oral cancer drug, or modify the dose my lymphoma could quickly return in full force. So I need to see what the specialist thinks. ... We'll know more in a month. After my consult and bone marrow biopsy in Seattle.

By the way, can anyone shed any light on why my CBCs often have "hypochromia" in the comments section, yet my iron levels are sky high? I thought hypochromic anemia meant iron deficient. Yet apparently I have hypochromic red cells. I get a CBC once a week, and this comment shows up about once every couple of months.

[Chirley]

I used to get a lot of results that said "hypochromia" so I was diagnosed as iron deficient but when my bone marrow biopsy showed increased iron stores and a blood ferritin of over 5000 they had to rethink my diagnosis. Turns out in my case that because I had a very low copper level I couldn't incorporate the iron into my cells and they looked pale. In the meantime the unused iron was building up in the bone marrow.

[Caregive]

Paul, my husband is not having difficulties with Exjade, thank goodness. His ferritin level is down some from 2300 to 2100 sort of. And if you read up on iron illnesses online, you can read about doing things with food to help some with the high iron. One is less meat at all and less beef. When you serve beef, no acid or vitamin c foods with it. They help get the iron taken up by your body when you eat iron foods. I'll look for a good site on that topic. Most excess iron comes from the donors' blood but I do what I can to lessen the intake, read labels on foods and such.

You will get good care at SCCA. My husband is going back, no date set yet. Just to see what there might be new to help him. He gets depressed at times but I keep him going. Glad you're keeping in contact here.

[Marlene]

In addition to the copper that Chirley mentioned, B6, folate and B12 are needed in the production of hemoglobin.

Your chemotherapy may be responsible also. Either directly or indirectly by depleting some nutrients.

[Paul-in-WA]

Chirley, thanks that's very interesting. Did you start supplementing with copper and if so did that resolve the anemia?

Caregive, Glad to hear Exjade is helping your husband. And the tips are good. I try to avoid meat, especially beef. And also if and when I eat meat I take apolactoferrin to help bind the iron in my digestive tract. Anybody tried that? Drinking milk when consuming iron-containing foods can help too, I've heard.

Marlene, as you point out, chemo can deplete many things. Just had my Vit D checked and it is normal, low normal but at least normal.

[Chirley]

Hi, yes I have copper infusions routinely now. Unfortunately, due to my chromosomal problem it causes an inability to metabolise copper properly and I pass it out in my urine so I have to be given copper regularly.

It does work to keep my counts up but they seem to be slowly trending down despite the copper. I've had copper infusions for over three years now so I think I've responded well.

I've also tested low for B12, Vit A, Vit C, Vit D despite being on replacement tablets and injections.

I think it's fair to say that my bone marrow problems must be related to nutritional deficiencies.

[Paul-in-WA]

Just got the path results from the nurse. Cytogenetics show
------------
deletion of long arm of chromosome 13 in two of the twenty cells examined.
ISCN Diagnosis: 46,XY,del(13)(q12q14)[2]/46,XY[18]
Deletion of 13q is common on myeloid neoplasm, including MDS, CML, and AML.
-----------
I've had a b-cell low grade lymphoma for seven years and transfusion dependent for three years, but this is the first time cytogenetics has shown any evidence of something amiss with the myeloids. Would seem to be something new, possibly a transformation or treatment-induced. I don't know anything about MDS or genetics but seems only one deletion in 2 of 20 cells is rather low grade? Or maybe it doesn't really matter, broke is broke. Spent the last seven years learning about lymphoma treatments and now a whole new ballgame....I expect the doctor to call me soon to elaborate.

[Caregive]

Paul, see you in Seattle June 21 at AAMDS conference.

Husband's ferritin level is now 1600. Down from 2300. He gets 500 mg orally first thing in the morning. Transfusions are every three weeks more or less now. Well, not less but some times a couple of days after three weeks. He seems stable. Thankful for every day.