MDS Iron Overload

[shanghied6]

Hi to all,
Greetings from New Zealand
I was diagnosed with MDS last June and now have 2 weekly blood transfusions which have caused Iron Overload.
I am soon to have a chelation pump and wondered if those who have this treatment could tell me their personal thoughts about it. Are there side effects? and how is it attached so that it dosent move when sleeping, my haemo said it is taped, but this dosent seem very secure to me, as I move around a lot while sleeping, any tips on this would be appreciated.
Today I had a MRI and was a bit worried about claustrophobia, I had a good look at the machine before going in it, and was happy to see that the end of it was open and not the dreaded closed in tunnell. If anyone whose going to have this MRI and is worried dont be, I just shut my eyes and listened to all the noise it makes and it was over in no time. I had this - to see if Iron overload has damaged any organs. Hence the future Chelation Pump.
Bless you all.
Delwyn.

[riccd2001]

Where I live docs recommend that when serum ferritin exceeds 1000 and you've had between 20 and 40 units of PRBCs, then it's time to start one of the medically accepted chelation treatments. There are a growing number of 'alternative' suggestions in this forum, but I'd be very careful in trying ANY of those suggestions.

However you decide to proceed with chelation, make sure you have a known baseline for Creatinine. Many of these meds alone or combined can cause increasing dangerous Creatinine levels which can lead to serious non-reversible kidney damage.

My experience with Desferal sub-cu was not good. I had severe site reaction and discontinued after 5 days. YMMV but I use Exjade (3x500) daily and am able to handle the side effects fairly well. Starting in 2008 and to date I've had 190 PRBCs transfused and there are other members on this site who have had many more!

[Birgitta-A]

Hi Delwyn,
I hope you have got a port-a-cath and that you will get Desferal in the port. I started with Desferal Aug 2007 and continued to get it during four days in connection with txs until Sept 2010 when I didn't need txs due to good response to Thalidomide.

The Desferal was given from a small hope-pump, that looks like a lemon.
http://www.iflo.com/prod_homepump.php
The pump was put into a pouch, that was tied around my waist. From the pump the Desferal went into the port. The needle was taped as your doctor told you. I had no problems when I slept but had to tie the pump around my neck and take good care when I took a shower.

Desferal has been used during more than 40 years and I had no adverse effects but my eyes and the hearing was controlled once a year.
Kind regards
Birgitta-A

[shanghied6]

Greetings all,
I have now been on the chelation pump for 2 weeks. Its a 8 inch by 3 inch thingy which has a shringe which I mix up and load, I found it very awkward wearing it both around my neck and/or waist. I now put it in a sock and pin to my trousers waistband. In the last 10 days have developed a rash which I am not sure whether its the pump medication or a course of antibotics I am currently taking. So I guess wait and see.
Delwyn

[Anne Yeomans]

Hey everyone:

I am involved with Moffitt awaiting a BMT. My doc here in WPB as well as Dr Lancet and Dr. List from Moffitt. There believe is that the treatment for iron overload is more damaging than the iron overload. They really don't do anything. They have not know anyone to die from it. Kinda watch and see. Anyone got anymore info on this?

Anneg
God Bless

[gramous]

hello,
Iron overload causes damage in heart and liver especially in MDS low grade where people can live a long time with the desease... For the intermediate and high grade mds, iron overload is not always a problem because they someone don't live enough to experiment "iron deseases".... Iron chelation is not a simple treatment and can have side effects... but 't is necessary in some case.... perhaps not in your personnaly case. sorry for my bad english.
have a nice day and take care

[Greg H]

Originally Posted by Anne Yeomans

Hey everyone:

I am involved with Moffitt awaiting a BMT. My doc here in WPB as well as Dr Lancet and Dr. List from Moffitt. There believe is that the treatment for iron overload is more damaging than the iron overload. They really don't do anything. They have not know anyone to die from it. Kinda watch and see. Anyone got anymore info on this?

Anneg
God Bless

Hi Anne!

That's really fascinating! Given the stature of Dr. List, you've got to take his opinion seriously. I know there is considerable debate among docs about whether treatment for iron overload in the MDS is worthwhile, but I've never heard of anyone arguing that the treatment is actually harmful. There are some potential side effects, of course, like with most of the drugs we wind up taking for this disease.

My local doc was skeptical of chelation, based on the research he'd read. And my docs at NIH were also not big believers in it either, until I got up over 5,000 and my transfusion interval wasn't going down. Then they actually insisted I start chelation.

Gramous is right that reducing iron is more important for younger patients or those with longer life expectancies. No one (as far as I know) questions the need of thalassemia or sickle cell patients in their 20s to have chelation.

Maybe you can ask the Moffitt docs what they mean about the treatment being harmful, so we can figure out if they are just worried about the potential liver, kidney, hearing, and vision side effects or if they know something else that we need to know about.

Good luck down there!

Greg

[cathybee1]

I'm curious too. Thanks for the post, Anne.

[triumphe64]

Dr. Maciejewski recommended against it for me. It would take too many years to be harmful. It also interfered with some of the meds I take and also throws off the accuracy of some of the lab tests.

That all might be different had my numbers were very high.