Chelation Pump

[chris]

Hi Meerkat

Thanks again for giving us all the practical information which people need. I guess that not many of the men will be wearing a dress either (!) so problem solved! So heartening to hear how you managed to fit it into everyday life. Delwyn - I hope this has reassured you?

Also was so glad to hear that, although it is a rare occurrence, (Janet - this is what I meant!), you do seem to have benefited from an improvement in your bone marrow to the extent that you are not now needing transfusions and hence, no more need for iron chelation. All good and long may it continue for you.

Best wishes

Chris

[Davidsb]

I'm about to start Chelating with Desferrioxamine using the pump method. Can any current users recommend a good method of carrying the pump during the day? Bum bag, shoulder bag, sock? Thank you.

[janetstanford]

Hello David
Sorry i cant answer your question just thought i would welcome to you to the site Hello
maybe a call to Sophie she may be able to help put you in touch with another member who can help or ask your nurse at the hospital
Take care Janet

[chris]

Hi David

Have you read the earlier posts here? Meerkat used a pump and managed to fit life around it. Maybe you could PM her ( sends a private message to personal e-mail)? I'm sure she will have some good tips.

Best wishes

Chris

[meerkat]

Dear David and others.

I'm not currently chelating, but expect to do so again at some point in the future.

I don't know what system you are using. The pumps I used were initially supplied with a material 'tube-like' holder to keep them in. But I didn't like them. They were very flimsy and see-through, which meant people could see that I was using some kind of medical device. A good friend, handy with a sewing machine, used one of these holders as a template to make me about a dozen cloth holders. This meant that it was less obvious what it was. (One work colleague thought I had a folding umbrella attached to my belt!)

These holders measure about 6cm x28cm. They are elastic around the top, so the pump is secure within the holder. Then I just attached them to a waistband with a safety pin. That worked fine for me.

If these would be appropriate for you, then I am happy to give you a couple!! I have only so far used two. They are made of curtain lining, so are quite discreet. And of course are washable. Or perhaps you could design your own holder!! Anyway happy to help if my holders would be of use. Just let me know.

And the chelation brought my ferritin levels down really well, so keep going with it.

Bye for now

[chris]

Hi All

I have posted this here as most issues around iron chelation are in this topic. Thought you might be interested (especially Meerkat) in this piece of research from the ASH conference in Dec 2012. Apparently nearly 20% of MDS patients on Deferasirox for iron chelation therapy for 12 months became transfusion independent - which is what happened to Meerkat.
Not sure that they know why but it is a bit hopeful!

https://ash.confex.com/ash/2012/webprog ... 51991.html

Best wishes

Chris

[janetstanford]

Chris
They became transfusion dependent ??? i have been on this drug since Jan 2009 and although i have AA as you know all my other cells except blood cells are now normal ...i know with AA the white cells attack the red ...i must read the paper through the link sure i will have some questions for my doctor

Janet

[janetstanford]

HI Chris
Help ii have used the link you kindly put on your post but so many pages and info there i was confused and could not find it could you please HELP and put a link on to that particular page to help an idiot thanks Janet

[chris]

Hi Janet

This is the link to the page you need. You should be able to click on it. It is a research paper but there are results and a conclusion there. Can't think why this didn't work because I just tried it and it's all there?

https://ash.confex.com/ash/2012/webprog ... 51991.html

Please read my post again!! It says that some people became transfusion independent - in other words, after being treated with Deferasirox for a year, they did not need to have blood transfusions any more because their red blood cell count improved. I think if that was going to happen to you, it would have happened by now as you have been on it for several years and, of course, it didn't happen to everybody in the study.

Hope this helps

Chris

[janetstanford]

Sorry Chris
Read your post in too much of a hurry and have to says transfusion due in a few days so i am at low energy levels ect ect nothing is working right mind that could also just be age
Sorry again Janet