September 4, 2018 at 10:14 pm #37269Tereze GluckParticipant
I have high-risk, chemo-related MDS, and am waiting for a bone marrow transplant. I’ve been getting transfusions for about 5 months, and my dr. Did the first ferritin test. My ferritin count was 1498. I expect I will have to start chelation.
I’d appreciate hearing from anyone who has had chelation – when it was started, what it was like to go through. Any info welcome!
TerezeSeptember 7, 2018 at 10:51 am #37290mdsfoundModerator
Hi Tereze, Happy to connect you with another MDS patient who is getting chelation therapy. If you would email me at firstname.lastname@example.org that would be great. Thank you, AudreySeptember 18, 2018 at 3:31 pm #44069LeAnn DukeParticipant
Hi Tereze, I have a high ferritin level due to MDS and also increased by multiple blood transfusions. I usually have 2 units of blood every couple of weeks which adds iron to my blood and my body has no way of getting rid of it. Last year before my stem cell transplant my ferritin level was at 4300 (yep that’s right, 4300). None of the Drs seemed to be concerned about it until I asked about my liver enzymes going through the roof. They they checked it. The Drs at MD Anderson weren’t too concerned about it, but my oncologist close to home decided to start me on a drug called Jadenu. Now here’s the kicker. Jadenu runs about $12,000.00 per month and if you have a good insurance with no limit on drugs you are a lucky girl. Jadenu is a pill that is easy to swallow and it gently (at least for me) pulls the iron off your body through your urine and your bowels. I have had no issue with taking this drug, though they do say there can be some severe side effects. The problem comes in being able to take this drug for longer than a couple of months. The company that makes it will help you by contacting foundations and groups that provide grants to help people afford this drug. But if you have a limit or a pharmacy coverage this might limit you on how many months you can get the meds. No one can afford $12,000.00 a month for a drug month after month. Sometimes your Dr might have samples they can give but not often. If you require chelation your Drs office will help you apply for assistance, but I just want to inform you of the difficulty in keeping it going, because for me, if I didn’t have the assistance my copay would still be $4,735.00. Still ridiculous! It shouldn’t be this way, but sadly it is.
Another option for chelation is an infusion that I did at home every night for 5 nights a week. It is a drug called desferoximine (or Desferol). It is cheaper this way. One wouldn’t think so with all the paraphernalia that comes with the infusion delivery. A pharmacy sent it too me every week, with a pump, the bag of medicine, the needles, alcohol wipes, gloves and everything I needed to use to hook up to this med. The needle is tiny and placed in the stomach, then taped in place. I would hook up at 9:00 pm and sleep with it and unhook at 7:00 am. It was a pain and inconvenient but it did the job and lowered my iron count to about 2000 so I could have the stem cell transplant last May. I will add here that the infusions can cause some pretty severe joint pain and high iron can as well. But I will be honest and say that the infusions brings on more joint pain than the high iron. I have not noticed the joint pain with the pill form chelation. Sadly my transplant has failed and i am dealing with the same problem again, going through the same applications for assistance, and most likely soon will have to start the infusions again, because the pill form is too expensive. I had hopes that the cost would go down, but instead it went up from last year from over $8,000.00 to $12,000.00 this year.
I know this might be discouraging and I’m so sorry, but this is factual and it is hard to get anyone to care that first we have a incurable disease and second that the drugs to treat the problems that come with it are too expensive to afford. But I know your gonna need information and there isn’t any use is soft soaping it! It is what it is!! Good luck and if you have any questions I’ll try to answer them for you.
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