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Ryan Jay
Wed Sep 8, 2010, 09:09 PM
Hi all,

I am about to go on Desferal for very high iron levels.

Exjade is off the table for me because my liver function is a little off from the Cyclosporin.

Anyway, could I use the PICC line to hook in the pump, or would I have to
insert the needle myself?

I asked my doctor today and he seemed a little unsure of the answer.

I also hunted around for an answer online and couldn't find anything definitive.

The doctor also suggested administering the Desferal during my weekly transfusions.

Anyone here have experience with this?

Thanks,

Ryan

Marlene
Thu Sep 9, 2010, 07:29 AM
John used his central line (hickman) when he was on desferral. Ran it in for 8 hours during the night. The plan was to do it for 5 days and then take the weekend off. This worked pretty well for him. You should be able to use the PICC. When his line got infected, it was pulled due to an infection and he switched to the sub-Q. What a pain that was.

Make sure they give you single dose syringes versus the dosage all in one. You don't want to be hooking up the same syringe more than once. We had home health care come out to train us on the pump and hooking it up. We did the first dose in the doctor's office so they could make sure he had not adverse reaction.

You can also get it when you get transfused.

Ryan Jay
Thu Sep 9, 2010, 09:44 AM
The doctor told me that he would like to at least hold my iron levels steady until my counts come back up.

Unfortunately high iron levels run in my family, aplastic anemia notwithstanding; so I'm getting a double hit. :(

Marlene
Thu Sep 9, 2010, 09:58 AM
What's your FE running now? And, do you know what it was before you started to get transfusions. That's a good baseline to have. If your iron was high prior to SAA, then getting the excess iron off would be a priority. Even though they say it takes 10 years for excess iron to effect you, I think it impacted John within 5 years. Especially his endocrine system. It all really depends on where you body is storing the bulk of it and how well those organs can tolerate it.

It's taken forever to get John's iron down. He's close to normal. A few more phlebotomies and I think he'll be able to stop.

riccd2001
Thu Sep 9, 2010, 08:06 PM
I'm not sure this helps answering any of your specific questions, but I'll give an idea of my iron-level situation and what happened to me.

About two years ago, I had reached 40 transfused prbc units(about 250ml per bag) and started 1.2 ml/hour sub-cu Desferal to get back from a ferritin level over 2000ug/L down to around 1000. I lasted about one week before having a severe site reaction and needing to discontinue that treatment.

I've been on Exjade since than, but have recently developed kidney stone problems, so because of the possible side-effect of Exjade on kidney function my hematologist has stopped that treament for now. Last week I had 128th transfued unit and my ferritin level is around 820ug/L.

I think we're all lucky to have more than one drug to keep elevated iron level under control.

riccd2001
Mon Sep 27, 2010, 10:15 PM
According to today's MDS Beacon, late 2011 we may have an alternative oral theapy for high-iron levels...:)

"FerroKin BioSciences Launches Phase 2 Trial For New Drug To Treat Excess Iron FerroKin BioSciences recently announced the launch of a Phase 2 clinical trial studying FBS0701 for the treatment of high iron levels due to red blood cell transfusions. FBS0701 is a new type of drug that binds excess iron. Two different dose levels as well as the efficacy and side effects of the drug will be investigated over a period of 24 weeks. MDS patients will be included in the study. For more information, please see the FerroKin BioSciences press release or the clinical trial description for the study."

http://www.clinicaltrials.gov/ct2/show/NCT01186419?term=FBS0701&rank=2

susansr
Sun Oct 3, 2010, 10:21 PM
The doctor told me that he would like to at least hold my iron levels steady until my counts come back up.

Unfortunately high iron levels run in my family, aplastic anemia notwithstanding; so I'm getting a double hit. :(
Hey Ryan,

I, too, was wondering what your serum ferritin is? Mine is at 1415 right now and doctors at Dana Farber suggest not to treat. It seems its very controversial whether to treat or not, so we're sitting tight and just watching it.

Luckily I only get RBC transfusions 2-3 months cuz who knows where these levels would go if it were more frequent.

How is your platelet level doing? Hopefully on the rise. Good luck!

Ryan Jay
Mon Oct 4, 2010, 02:31 PM
Hi again,

Last check, my ferritin was up around 3,200 and I just hit my 30th PRBC transfusion. High ferritin levels run in my family too.

Anyway, about 50 days out from ATG and I've only needed one PRBC in the last two weeks. My reds are hanging in there pretty well.

My last platelet tfx was on 9/16. I've been hanging around the mid teens. In early Sept. I would jump to the mid 20s after transfusions and then crash back down to a 5 or a 3.

Whites are doing very well. I've gone from averaging 1.8-1.9 to 2.6-2.7. And my ANCs just went over 1000 today; they had been 400 in the summer.

Hope everything is going well for you!