Chelation Pump

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Delwyn
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Chelation Pump

Post by Delwyn » 16 May 2012 12:07

Hi to all,
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. NZ :)
janetstanford
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Re: Chelation Pump

Post by janetstanford » 16 May 2012 15:07

Hello Delwyn
good to hear from you again :)
i suffer from iron over load know what you mean about the scan i was a bit concerned at first but got over that quickly ..
i had my last scan in jan 2010 and thankfully the iron had gone down from 9 (previous scan) to 4.3 in the organs which means the meds i am on daily are doing a good job ...having said that my ferritin count last time was approx 19000 (in the blood test normal is 200/400)...i am on exjade daily 2gm (this is the most i can have as amount is judged by weight ect )

questions are
what is your ferritin count
what if any meds are you on
what is chelation pump ( new one on me :?: )

also glad you seem so much more positive since your last posts
hope to hear from you soon Janet :D
Delwyn
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Joined: 20 Oct 2011 11:43
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Re: Chelation Pump

Post by Delwyn » 17 May 2012 11:02

Hello Janet,
Thanks for your contact. I dont know what my levels are. The tablets you take for iron overload are not available to me, reasons given are I am either too old or I have to pay for it, which I cant afford.
A needle will be inserted in my stomach and a pump administers the drug. I will have to have this for 12 hours each day for 5 days, cant say Im looking forward to this but there is no alternative. NZ is so far behind when it comes to rare illness's. Thanks goodness for this forum.
Delwyn
chris
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Re: Chelation Pump

Post by chris » 17 May 2012 11:40

Hi Delwyn

I was a bit concerned to read that iron chelation tablets are not available to you in NZ for various reasons as this would be preferable I would imagine. However, whilst I have no experience personally, I have heard of MDS patients who have used this procedure and the impression I had was that they soon settled into a routine with it and it wasn't a problem. Most used it overnight as it restricted their lives too much during the day - though one person used it in the day and used the time on the pump as enforced rest e.g. from afternoon until bed time!

I hope any patients with direct experince will post you.

How are you feeling now,Delwyn? You were quite low before? We had another posting from Australia (see quilt-swim) so are quite international now!!!

Take care.

Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
janetstanford
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Re: Chelation Pump

Post by janetstanford » 17 May 2012 17:40

Hello Delwyn and Chris

First seems to have been a busy day on the forum and not all good news .....correction my last scan was jan 2012 (typo)

having to pay for meds again this shows how lucky we are having the old NHS tell me do you have insurance are there any trials availabel :?:
the treatment i am on was new in 2009 i was prescribed it then the funding found which i did not know at the time what my doctor had done ...just found this out at my last clinic all i can say is i saw my doctor in a whole new light my hero :D
i remember at the time discussing treatments 4 of them can not remember names but 1 was hospital 5 days all day and he did say this no life ...so i got the exjade ...i also know there are others in tablet form which he said i could take alongside the exjade should i need it
do hope you do not find it restricting and maybe a bit of research may find an easier option :?:
hear from you soon Janet
meerkat
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Joined: 09 May 2009 13:41

Re: Chelation Pump

Post by meerkat » 17 May 2012 18:55

Hi Delwyn

I used desferrioxamine in a chelation pump for about a year in 2009/10, when I was requiring regular transfusions. Like you I was apprehensive at the prospect. I chose to chelate during the day, as I thought it would affect my sleep too much, at night.

After my initial anxiety I really didn't find it a big deal. It became part of my morning routine, like getting dressed, or cleaning my teeth although I was always pleased to remove the needle at teatime. I attached the syringe, in a sheath, to my waistband, and got on with work, and life.

I don't know how it will work in NZ. Here I received a fortnightly delivery of prepared syringes which needed refrigerating, and needles. I did have to ask my specialist haematologist to liaise with my local hospital so that I could get the best 'package' as my local team had little experience of chelation and, I suspect, didn't know what was available.

The needles I used were an all-in-one infusion set, which I just connected to the syringe. The needles were like very fine drawing pins, with tape already attached. And very sharp!! And inserted like a drawing pin in a corkboard! it sounds like a painful process but of course lots of people have to inject themselves each day and this seemed a relatively small price to pay. I was provided with extra tape/dressing to secure the needle more and that generally worked well.

And I reiterate the needles are very sharp!!

I'm happy to answer any further questions if you have any, but I have to go out now. Keep positive

Bye for now
janetstanford
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Re: Chelation Pump

Post by janetstanford » 17 May 2012 20:49

Meercat
sorry but this sounds ALL CONSUMING and hard i can not believe you had to do this when at this time exjade was being made available i do hope should you ever need to again that you will be able to have exjade ......Janet
chris
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Re: Chelation Pump

Post by chris » 18 May 2012 14:33

Hi Meerkat

I was thinking of you when I said that some people had posted that using the chelation pump was manageable so I am so glad you have come on the Forum and confirmed this to support Delwyn. I hadn't realised you could move about with it and had visions of being pinned to a chair all day so it was useful to know you could get on with things during the day. I've heard others say the same. It's a shame that Delwyn does not seem to have the option of oral medication but it does seem to be something you can live with and I think I'm right in saying that, in your case, it seemed to be helpful to the bone marrow and that you did come off it eventually?

Best wishes

Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
janetstanford
Posts: 335
Joined: 01 Nov 2010 17:54
Contact:

Re: Chelation Pump

Post by janetstanford » 18 May 2012 16:06

Chris
it is not helpful to the bone marrow as such with overload the risk is that too much iron is stored in the organs heart and liver mainly which can cause serious problems the drugs works like a chemical magnet to draw the iron away from/out of the organs which is then disposed of by the body ...normal range for iron is 200/400 in transfusion dependents doctors like to get it under 1000 as over load can then in turn cause issues should a transplant be needed (why i do not know )....thats the basics of how it was explained to me ...
take care Janet
NB not heard from Sarah for a while hope she is healthy ect
meerkat
Posts: 15
Joined: 09 May 2009 13:41

Re: Chelation Pump

Post by meerkat » 18 May 2012 20:05

Hi all

Chris you have a fine memory! My professor recommended the desferrioxamine, rather than oral medication as desferal has been used for years to support people with thallasaemia so he felt in my circumstances it was a safer option.
The drug was infused using an elastomer (?sp) balloon infuser which was about the size of a 50ml syringe. The drug is inside the balloon, within the syringe and the balloon deflates over about 10 hours, pushing the drug into the body. I worked, attended meetings, travelled on public transport, drove the car, went shopping etc etc. It was not the least bit restrictive. I guess if you wore a dress then it may be more difficult, but I didn't have that handicap!

I have been very fortunate as the drop in my ferritin levels (from about 4,500 to 600) appears to have kick-started my marrow production. So as I produce a few more red cells, so the ferritin drops a bit further, which helps my marrow...and so on. So my Hb is holding now at a higher level than when my MDS was diagnosed in 2007. This is not a unique response, but apparently is a rare event. My professor has said I will become transfusion dependent again at some point, and then will need to start chelating again. From my past experience I would agree to using desferroxamine again, if that option ws recommended.

Bye for now.
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