Refusal of Iron chelation therapy

[carolib]

Hi.
I am new to the MDS forums. My 84 year old mother was diagnosed in January and is transfusion dependant ( 1 - 2 units every 2 weeks). Her consultant has informed us that she is not suitable for treatment for Iron overload due to her other medical problems - she has chronic kidney disease, heart problems and other minor ailments. We were told that as the iron overload treatment is very toxic her body would not cope, has any one else encountered this?
Since October 2010 she has had received 22units of packed red cells which according to information on this and other sites means we must be getting close to iron overload.
Can any one help with the signs we need to watch out for? When I enquired what would happen when iron overload was reached I was told they will just continue with the transfusions as she can't survive without them. She has been started on a course of Epo injections with the hope of reducing the need for so many transfusions but to date it has made no difference.
Thanks for reading this.
Hope someone can help with information

Regards
Carol

[janetstanford]

HI Carol
a scarey situation to be in the stress and worry must be hard to deal with...i am transfusion dependent and ihave iron overload .... been on exjade daily since feb 2009 at that point my iron stood at 6000+ (what is your mams ) i also had epo injections which did not work..i started on 1gm daily and worked up to 2gms it is normally given by weight but due to results and how good they are it is proving safer to give an increased dose... i recieve 2/3 units of blood every 3/4 weeks and ....l had a further reduction in iron last qrt it stands at 1900... i know normal levels are 200-400 a bit further to go ....doctor says have to get to under a 1000....
in the book questions and answers you can get from Sophie there is diet advice for this
you could ask your doctor about exjade....It may or may not be suitable obviously you would check it out ..
i am due for another scan soon as iron overload can cause heart liver and kidney problems i am lucky because liver and kidney functions have improved to normal since 2008 i know this from my blood results which i get a copy of every blood test i have ....
there is a drug which helps reduce iron overload in the heart sorry can not remember the name at the moment but you can also take this alongside exjade...the name begins with a D i will root it out for you .....
new way to scan for iron overload is ferri scan.... they sometimes do a liver bi-op to calculate iron overload ......
Sorry i can not help solve the problems but may have given you some avenues to explore ...also Sophie may be able to point you in the right direction#
hope this helps take care Janet

[carolib]

Hi Janet

Thanks for your quick response and the information I will ask for a copy of all mams blood results at next consultation which is in 3 weeks....at the moment the only result we are told is her Hb level which varies from 4.5 (45) to 8.5 (85).
It is a very stressfull time for everyone and I feel as though we are in a no win situation.....without the transfusions mam will die and untreated iron overload will also cause death from organ failure.... so which route do we take. She has very little quality of life at the moment as she is exhausted all of the time and spends her days either in bed or lying on the setee... we got her a wheelchair but the effort of getting dressed and washed takes its toll and then she hasnt the energy or will power to go anywhere. Mam is at medical day care today for a transfusion and I mentioned Exjade to them but it cant be prescribed as it can cause renal impairment and she only has 20% kidney function now. We seem to be going round in circles !!! Never mind time to look on the bright side and hope that I can find some info on a drug that is suitable....just have to be optimistic.

It is nice to talk to someone who understands what we are going through and I am so glad your treatment seems to be helping.... hopefully you will soon get below that magic 1000 mark.

Thanks again
Carol

[janetstanford]

HI Carol
sorry about your mam bloods of 4 that is what i was first time i was ill ...passed out and found myself in the hospital i had been so tired walking up the stairs in 1 go was almost impossible .... a couple of times my bloods have gone done to 6 this was at the start when i knew nothing i learnt quickly to manage them....
i do know how she feels as your life becomes a circle transfusion to transfusion and yes if i did not have them the same would happen to me which i have thought about but prefer not too .....

organ failure that is why both i and the doctor monitor kidney and liver and i was so relieved when mine returned to normal i am due another scan soon to check all organs (last was 2 years ago )
some of the symptoms day to day of iron overload are tiredness (can not win with this 1) but also aches and pains in the joints in fact almost feels like the ache is in the bones but it is actually in the soft tissue ..i have also had restriction in the soft tissue..best way i can describe is "can not flex muscles " feels as if something pulled/damaged but as overload has reduced so has this
Anniec has made a comment on another issue and has said do not know if you should feel lucky or unlucky how true i have wondered that so many times ...
do hope your mam feels fitter today after a top up (as i say )
hope you find a road to a solution soon
take care janet

[chris]

Hi Carol

Having been on the AA MDS Foundation website and listened to some of the webinars, the impression I had was that the jury was out from the medical fraternity on whether removing iron made much difference to the outcome for patients who had accumulated iron through transfusions. Some are for, others are now being more cautious but in any event if the medical advisors say that it isn't an option for your Mum, you might want to read about why there are question marks over it and them maybe you won't feel so worried that she can't have it! It takes a long time to build iron to the levels where it is stored in the organs and causing damage and at 84, that may not be an issue for your Mum.

You can find the links by Googling AA & MDS Foundation and then going to the Patient Information tabs ( I thinks!). You will find whole topics on iron chelation.

Hope that helps. Do contact Sophie to see if she has any later information.

Best wishes to you and your Mum

Chris

[janetstanford]

Hi Carol
found it Deferiprone may be of some use to you
Chris yes do agree dependent on the doctor who and drug it is a difficult to work out which road is best to go down but it is a worry not knowing how much damage may or may not be done.....I know iron over load is an issue when considering a B.M.T which may be the reason for reducing it to a safe level

take care all
Janet

[Sophie]

Dear Carol,

please do contact me regarding the iron overload and iron chelation question for your Mum.
Your query is of a specific clinical nature and needs a specific and detailed response.

Every patient's circumstances are different and what works for one person may not be appropriate for another.

With any clinical query - please do not rely on the discussion forum alone to seek information. It is important to share experiences - but you should always consult a clinical person as well.

The forum is here mainly for support and contact but does not ever replace clinical advice.

As Janet and Chris have suggested - please do call or send me an email and I will help with more detailed and targeted information or point you in the right direction to get the appropriate answer.
I can also mail you the 100 Q&A book if you send me your address.

Dear all - please do not ever hesitate to contact me - whatever the query. This is why we have a phone contact
I am never too busy to help answer a question

Sophie
Patient Liaison
020 7733 7558

[carolib]

Hi

Thanks everyone for the replies..sorry took so long but mam hasnt been too well so have not had time to go on internet. I am going to contact Sophie directly as she suggests and see what help and info she can give me. It is so good to read other peoples experiences and to know there is always someone willing to listen and help.... not many people seem to have heard of MDS so it was nice to find this forum.

Regards Carol

[janetstanford]

Hello

glad to give support good luck Janet