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Severe Iron Overload caused by too many IV Iron infusions
I'm a 65 yr old man, with 2 prior cancers, currently cancer free? I have a condition called Iatrogenic Iron Overload, ( iron overload caused by medical treatment). I developed chronic anemia from external beam radiation in late 2021. I was treated with External Beam Radiation for Prostate cancer that caused a radiation burn in my descending colon. I was referred to the Cancer Center of N. Dakota in Grand Forks, ND in mid 2022 for chronic anemia. Over 9 months I received 13 IV iron infusions and the doctor never checked my ferritin levels until after the last infusion. It was 2149 ng/ml. I tested negative for Hemochromatosis. Two months before any treatments my ferritin level was 49ng/ml. Now I have systemic Iron in most of my organs including my bone marrow, lymph nodes in my lungs, my liver is severely overloaded with Iron. My left kidney atrophied and was removed in 10/2023. My Pancreas was discovered atrophied in June of 2025. I don't qualify for Chelation therapy because I only have 1 kidney and it has Stage 3A CKD. My Oncologist/Hematologist ordered 4 phlebotomies, but those were cancelled after the 1st one because my Hemoglobin dropped to dangerous levels. Finally after no treatment at all for the high serum ferritin in my body for almost a year, I was referred to the Mayo Clinic in Rochester, Mn. I have my first appointment on 10/03/2025, to see if they can do something. I pray that they can help me otherwise my prognosis is grim. When the Ferritin reaches my heart, it will deposit in the tissue and muscles and my heart will no longer function. I'd like to hear from anyone who is or has experienced Iron Overload, especially if it was from a doctor who could have prevented this, if he'd only done periodic ferritin level checks in between IV iron infusions. God bless and I hope to hear from someone?
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@guyjeff123
I really care about you and want you to know that I think most of us with cancer are frightened. We do not know where our journey will take us next. This week I am having a “port” put in just above my heart. They find it so hard to find a vein for my many blood transfusions so a port under my skin will be better for me. It is not a big operation but just another bump in the road. Hang in there. You have overcome so much in your past and achieved so much in your working life. I care about you as I am sure everyone on this site does. My best wishes to you.
@guyjeff123 I am absolutely mortified that this physician was and has been allowed to continue to practice and did not lose his medical license! That rests solely in the lap of the American Medical Association! Shame on them to continue to let him practice and even allow him to participate in any research endeavors at all. If he was shady enough to do it the first time then he can certainly be just a tad more shady. What a travesty! Good Ole Brotherhood!
@wakeley I believe you really do care about me. Your message is sincere, so I believe what you say. It's a shame there aren't more people in the world like you. I wish you the very best in your health challenges. I would liked to have known you. There are so many people in this world that care about nobody but themselves. When I was in active addiction over 16 years ago, I was like that. Selfish and self-centered. I walk a different path now. I believe in good. I strive to be a better man everyday. I'm grateful that I have a best friend. He's 72 and retired as well, although he's very healthy and pursues a healthy lifestyle. He and his wife have traveled the world and they'll probably do that until they can't. Unlike me, he invested his money . He was a Mechanical Engineer and is into a lot of Holistic Medicine and ancient Hawaiian Medicine. His 3 children have all just graduated college, and I think at least a couple of them are pursuing further degrees. I am blessed. My health would argue otherwise, but things could have turned out much worse for me. I know this is a forum for health issues, so I'm going to give you my email, if you want to talk about other things. I hope to hear from you.
@kndaustin71 Did you google Anil Potti and Duke University Medical Center and read about what he did there? And you're right about the brotherhood. Everywhere I go this doctor has friends. My radiation Oncologist and my Oncologist/Hematologist are both friends of his. When my friend drove me 7 Hours to the Mayo Clinic, two of the three Team members stated they are friends with Dr. Noyes who owns the Cancer Center of North Dakota, where it happened and they both knew of Dr. Anil Potti. He's the cancer that needs to be cut out. Alas, I am trying to forgive him. It's what My lord and God would want me to do.
Jeff
I feel for you, my friend. I am just getting a bone marrow biopsy because of anemia. I will keep your story close by. I have faith in my doctors, but you must be wary about yours. Best of luck to you!
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1 Reaction@rimord Thank you for the sentiment. It's sad when you have to tell them what you want done. I am wary of them all. I research every single thing that's going on with my body, I ask them for blood work that needs to be done on a weekly basis. I shouldn't have to but if I don't, labs that are needed would not get done. If my hematologist had started The phlebotomies a year and a half ago, I was healthier and stronger and the ferritin level that just shut down my pancreas, and is in my lungs, bone marrow and severely overloaded my liver. might actually be in normal range by now. Instead, in 3 days I have to have a lung biopsy of a node that has almost double in size in a few months and 2 lesions in my liver, including one that is 25 mm. None of this looks good for me. I'm just praying for courage and dignity. I am also praying for a miracle. God bless you and I wish you find some answers when they biopsy your bone marrow. I'm having another one the 1st week of December. My hemoglobin has bee dropping for the last 3 weeks and is it 9.8. I hope we are still talking to each other in a year or two.
Sincerely
Jeff
@guyjeff123 Yes I did Google and more on Anil Potti, that is why I am so outraged that the AMA would continue to allow this person to be near patients. If he couldn't be honest with research then he's not gonna be honest with patient care. I appreciate your ability to forgive him but I feel you should do due diligence and let an attorney know if this person has upheld the Hippocratic Oath, "Do no Harm" By not standing up for your failed treatment you will be allowing others to be exposed to poor and dangerous patient care practices. Just my thoughts. I do so pray that you are doing better.....stay away from his colleagues. Birds of a feather tend to flock together
@kndaustin71 I do plan on pursuing legal action against him and the owner of the clinic, William Noyes, who hired him. I've just really had no time. Every week I'm seeing one or more doctors and having lab work weekly. My RBC's and my hemoglobin have been dropping every week for 3 weeks since I had the 2 phlebotomies to try and get rid of the iron. But for the last 3 weeks my hemoglobin has been too low to have another one. I'm going to have labs tomorrow and I pray that it hasn't dropped further. Last week it was 9.8. If it gets down below 9, I'll probably be admitted to the hospital. Tuesday I'm having a biopsy of a large node that has almost doubled in size. A week or so after that my Oncologist has ordered another biopsy of my bone marrow to see if the can find out the cause of my declining hemoglobin. There is only 2 law firms that do malpractice claims in Grand Forks, ND, where I live and they have both firms on retainer. I'm going to reach out to Fargo as soon as I can have some free time to talk to them. Thanks for your diligence and support. I'll keep you informed.
Jeff
We live in New York State. My husband, Mike, has received two injections of Reblozyl, which have significantly raised his red cell count. He has MDS. We are grateful for this improvement. However, we have just been informed that the cost of these injections is $816.00 each per month, which is more than we can afford. I have spoken extensively with our prescription provider, but unfortunately, I have not achieved any resolution. I have submitted a grievance in accordance with their prescription protocol, and we are now waiting for a response. If anyone can provide some ideas on how to move forward with this, it would be appreciated.
@justmeb5 Just a thought. You mentioned you have spoken to your prescription provider. Have you spoken to the Manufacturer of Reblozyl ? Maybe we're talking about the same thing, but the Manufacturers of drugs that are often out of reach for the folks that need them the most, will often offer discounted prices for them. Sometimes the discounts are substantial. Secondly, Do you live in or near a large town? I live in a small town in North Dakota, population about 50,000. We have a branch of a Nationwide company called NDAD. They pay for 4 of my drugs and inhalers that I can't afford. See if you can find the nearest branch of NDAD to you and call them. You don't have to live in the same town as they have an office. Just find the one closest to you and call them. I'm sure if you Google Search them, you'll find one close. If you have trouble with this, send me a message and I'll search for the one nearest you. Please include the nearest town to yo, or the town you live in. God bless you.
Jeffrey Guy