Desferal

[Gina]

Hello everyone! I have a lot to say and ask a little at a time. First I would like to know if anyone is or has been treated with Desferal? I have been using it for over a year, and the Dr.s apparently can't make up his mind how it should be administered. I was getting 1 gm mixed with 250 ml of saline over an hour, once a week. Then they decided maybe I should try it twice a week. Then it went to 2 grams some nurses mixed it with 250, others did it with 500, like they were supposed to, over 2 hours 2x a week. And now the past two weeks and I guess until my ferritin drops they are giving me 2 grams in 500ml saline over 4 hours twice a week. Exjade did not work for me
I'm just curious if they are doing it in an effective way. My ferritin bounces all over the place the highest being 2959 in Jan 08, which does not seem right at all. Dec 07 it was 1601. Last month (Feb) it was 1604.
I've had 19 transfusions~or 38 pints Jan 2005-November 2007.
I started 10 mg of Revlimid daily on 12/1/07. I've also tried Vidaza for a 6 month cycle and honestly I think it made it worse, thats when the transfusions started.

Sorry if I babbled or confused any of you, and thanks for reading

[Birgitta-A]

Hi Gina,
I was dx with MDS May 2006 and started with RBC transfusions at once since my HGB was 7,0. My liver tests have alvays been OK and in Sweden the doctors start chelating therapy when the liver tests are too high or the ferritin level more than 1500.

During summer 2007 when I had got 37 units of RBC:s we should start with Desferal but then I had four infections and very low HGB, WBC:s and platelets. I had several RBC transfusions and the ferritin level increased to 1962 Aug 2007.

Since then I have had Desferal from a home pump in my port-a-cath four days in connection with RBC transfusions every 6th week. I always get 25 mg per kg - that is 25 mg x 66 = 1650 mg. I don´t know how much saline it is in the pump but it have the size of a tennis ball in the beginning of the infusion. My last ferritin value was 1625

Oct 2007 I had a MRI of liver and heart. There was no iron in the heart and the heart function was very good.

Hope this report will help you . You know the ferritin level changes very much depending on when you got the last transfusion. The very high value – 2959 – was perhaps measured very soon after a transfusion?

Kind regards
Birgitta-A
68 yo, MDS Interm-1 dx May 2006, transfusion dependent, Desferal four days with transfusion every 6th week, Neupogen 2 injections/week, asymptomatic

[Marlene]

indicator of how much iron is in your system. Once it's elevated, over 1000, then you will see it bounce around alot. It's an "acute Phase reactant" meaning that just about anything can effect the reading. Any inflammation, infection, or even something as simple as how they handled the blood draw can effect the results.

On the desferal, I can't remember the dosage John was on but he did a sub-Q over 8 hours. For deferal to be really effective, you need to do it over multiple days at slower rate. When John had his central line in, he used that. John would do 3 weeks, 7days/week. He would then take one week off. His urine did turn orange when he was on it. You can do 24 hour urine sample to measure the amount of iron being secreted.

Here's a link on that my help you. You can also check the drug dosages at www.rxlist.com

http://sickle.bwh.harvard.edu/dfsc.html

[Gina]

Thank you girls for your information, I still seek more from ppl who have used it. More input please.
I get my Desferal through my port-a-cath. I was transfusion dependent approx. every 6 weeks. I haven't had a transfusion since 11/4/07 (knock on wood). That last one brought my hgb up to 9.8. I was at 9.2 when I started the Revlimid on 12/1/07. It went down to an 8 before it started to slowly rise again. On 1/21/08 I had a high of 10.2, and then it slowly trickled down to 9. I've been holding a 9 for 3 weeks. I have a Dr. appt on Monday, and see what he says about the Revlimid.
Right now my Iron is my main concern, I was recommended for a BMT 2 years ago, but I have 2 lil boys who need me & Im scared to death. I have no related matches and they have to use the registry. So, in the mean time I've been trying to buy myself time.
They called my Dx MDS in 2005, It was originally called Refractory Anemia with Ringed Sideroblasts back in 1999. I am 37 this year.
I know I need to make a signature line