Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: floWer on June 27, 2006, 11:28:55 PM
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I want to know ‘the little things’ that make life a lot easier with oral chelation. Apart from the obvious premier reason….being that it’s painless..
For Desferal users what do you think could change in your life?
For ICL 670 / Exjade or L1 / Kelfer users what has changed?
Oral Chelation is easier because:
- I will no longer have to explain to my 3 year old why mummy has to use a pump.
- I will not wake up in the morning and finding my pump has stopped during the night. So I will not wasting an injection, Desferal and my time preparing everything.
- It will be easier to be spontaneous during intimate moments and no longer arrange my pump around my private time with hubby. ;)
- I can sleep with comfort and no longer have to put up with a positional pump site
- I can wear the latest clothing or a swim suit without reviling lumps or bruising
- I am able to have a professional massage without having to explain bruising and lumps.
- I will be able to travel easier (I don’t have to worry about long distance travelling, carrying extra heavy luggage to accommodate all my medication) and explaining little vials of white powder to customs officers (Never easy)
- I can go camping without the next tent hearing the buzz from my pump. (I’ve never been camping because I’m worried about my pump).
- I can work night shift and not worry about my pump when I return home
- I can party to all hours of night without worrying about my pump and how long its going to take to finish in the morning. (Not that I am a party animal but a long night out with friends is nice)
- When I was younger I could of had ‘stay overs’ with friends/cousins without feeling uncomfortable about my pump. (Feel like the other girls)
- When I was younger and family had guest staying over I wouldn’t have had to lock myself in the room to prepare my Desferal
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Hello to all,
I agree and disagree there with you flower...
I was aloud to go to sleep overs and I didnt have to lock myself in my room when my parents had visitors...
I did party all hours of the nite with my pump on and that didnt really interfere...( I am not a party animal either but I do go out with friends and did have my pump on during dinner or at the movies...)
If you have a letter from the doctor then the customs officers wouldnt have questioned you about the desferal at all...
There isnt anything wrong with wearing your pump in public..Just you have to disquise it well...If you have a long extension lead you can strap the pump to the inside of your jeans or what your wearing at the time...
I have done so..I wore my pump to work...I never held back in not telling people I didnt have thal..Most of my work, family and friends knew about Thal..I have never kept it a secret...
Yes THE Oral chelators are better but the pump when I did wear it didnt bother me one bit..And I took it every where...Camping, holidays, friends houses, most places...
Take care
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Hi Smurfette
My point of this post was not to be critised for my personal feelings regarding the pump but in seeking undedrstanding on the personal, socialogical and physical hurdles it can impose on everyday life.
Consider yourself lucky for having the courage to wear your pump in public. After being summarily dismissed from one job and suffering constant discrimination I chose to no longer tell friends and workmates about my condition and that's my choice. If you choice to tell everyone then good luck to you.
I must admit I do find it hard to believe that you haven't had problems with customs when travelling abroad? I go overseas alot Smurfette, and I know what I'm talking about. I have had customs lock me in a room and question my carefully worded medical clearance letter (Of course I took all relevant documentation with me Surfette, who would possibly be so stupid not to in this day and age). It was all written in English though and seems to convince no one. I had one particular customs officer take my medication away and eventually return it 2 hours later with no explination why they took it away. A fellow thal major from my clinic had 2 security personnel pointing guns at him until customs checked back with Australia to see if his letter was real. If you haven't had trouble then consider yourself freakishly lucky......or lightly travelled???
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I agree with floWer as everyone has his/her own psychology and level of comfort. I'm a 24 year old male for crying out loud, and my Dad used to prick me(Until he was alive), and even now, I have to go to a doctors clinic for it. Think of all the inconvenience and embarrassment I have to face in the clinic when the other patients stare at you with bulging eyes when the doctor is doing his part.
I also considered myself lucky (but embarrassed) when I travelled between KSA-Pak as they allowed to let Desferal go after showing them my butterfly needles and syringes (lumpy scarred belly once). The only thing they removed from the baggage was the 9 volt battery from the pump.
Sleeping without Desferal would be a lot comfortable and I won't have to stay up all night like an owl when the injection site becomes sore after few hours of infusion.
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Hi Flower
What a lovely thought.. I can very well understand your sense of "FREENESS'.. it feels as if like the flight of the bird in the sky without any constant worry... after all these years of painful pricking each night, the oral chealator is a huge blessing indeed!
It is not the question of hiding that one has Thal... but yes all the hassel that one has to undergo with the pump, where ever you are.. whether at home, on a vaction, on an official trip....
I have had to prick my daughter for 23 years and I know what I felt each time i did that.. and to see all the black and blue marks each time I wasnt careful enough to push the needle well enough.
And now that she is on Exjade, I see the change in my mind set.. .. not to say anything about how elated , happy and free she might be feeling. I am sure she is feeling all the same things that you have mentioned.
I wish Exjade or L1 be available to each and every Thal...and soon!!!!
shikha mitra
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Yeah, I totally agree with you Shikha.
I wish that every thal could be given the chance to get onto an oral iron chelator like L1 or ICL670.
It's been an emotional roller coaster ride for me since starting on ICL670.
I was so happy, I just wanted to cry.
I just wish that it had come earlier for some patients who have passed away from iron overload.
I miss my all my thal buddy's, just wish they were all here to share the joys of not having to put the pump on.
All these years, since I first started to wear the pump back in 1980, all I've been hearing is about this new oral iron chelator, but it's still getting tested.Just got sick of hearing it all.
26 years later, it was a dream come true for me..my first taste of an oral iron chelator.
I was offered L1 two years ago, but I knocked it back, cos I was waiting for the other drug ICL670 to come out.
At times when I was at my lowest, I wouldn't do my pump, just to be free, not having to prick myself.
I knew of the consequences...so I kept doing what I had to.
What is it that keeps us going?
Flower, I know what you mean about having a pump on and not being able to hide it because the damn pump was so big & bulky, and it weighed a fair bit too, loved the holster though..ha ha ah.
I'll never forget my first pump..The old PYE with Variable Speed (Black & White), and so loud when it ran.
Sometimes I have to pinch myself when I'm lying in bed.
Other times I think, Sh*t, I didnt put my pump on last night, so I better put my pump on tonight...then I have to think for a while, then think to myself, You Idiot....
Take Care
Regards
AD
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I am the mother of a 17yr son, that has spent his whole life being pricked by needles on a nightly basis. He recently started taking exjade and is currently down to 5 nights a week on the pump. For him having a couple nights off from the pump has been incredible, it has given him an enormous amount of freedom. He can now atleast go out a couple nights a week and not have to worry about being home at a certain time to start his pump. Aside from a cure, exjade is an answer to my prayers. Jonathan (my son) would often have painful lumps at the injection sites, he's had many problems with it. From all the things that he goes thru on a daily basis, among them, diabetes, wearing the pump has been the most unbearable for him. In my opinion exjade is a life saver for many patients that struggle so much with the pump from the pain as well as the inconvinience. I look forward to the day when he may go off the pump for good. For those who have dealt well with the pump I think thats great, but for many of us parents and patients who have long awaited the arrival of an oral chelator this is a blessing for us, I couldn't be more gratefull for the release of the pill, I have waited 16yrs for this to happen, it's a dream come true. My son has had many complications and sitbacks from thall, I feel for once we finally got a break.
take care everyone,
Lily
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Glad to know that your son is using Exjade.
I think I've read somewhere in this forum that you shouldn't take Desferal with Exjade! Try to ask this from your doctor and if he agrees then your son won't have to get pricked at all! :clap :woot
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Dear Flower,
All your points are absolutely apt and very true. I doubt there will be any or maybe a rare thal, who having taken the desferal subq, would not agree to what you have to say about the pump and needles.
Your experiences have been shared by many of us : You would get a consensus Flower if you took a poll :thumbsup
Same problems that you said, about the sleepovers and camping and picnics, >>> whoever says it didn't "really" cramp their style must, as you say, have been exceptionally blessed! :rotfl
Also when one is married and has kids then one knows what you are talking about too, about the problems the pump poses.
"Yes THE Oral chelators are better but the pump when I did wear it didnt bother me one bit..And I took it every where...Camping, holidays, friends houses, most places..."
It' s great to be brave and optimistic and have the positive attitute towards thal, ...but please someone tell me how to be so damn "gung ho" :yahoo about it, that I could downright enjoy having the thal and taking the needles and pump :wub !!!! :whistle
The probs with the customs and everything....I carry the scrips and stuff too, but remain apprehensive ...coz one never knows.
Also, what about the bruising and lumps... that does show if U wear shorts etc, and swimwear as you said.
The only thing you cannot do with the pump is swimming and watersports ...............there I said it :noangel
Cheers,
Shilpa.
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Hi Lily
I too am a mother of a thal.. and I know exactly you feel with your son being on Exjade.. it is indeed an answer to all our prayers.. it is not easy to see the sufferings of your own kids after after day and for years.. it wasnt a matter of just a couple of days..
I sincrely wish that each and every Thal could avail of the medication so that they can all at least feel the sense of freedom from the daily pricks.
My daughter is on Exjade for the past 5 months. But her doctor at Duke Medical Center North carolina, USA) has asked her not to use Desferal along with Exjade.
But I read here that some are doing a combination therapy. So I wonder what is the correct line of action.
My daughters SF has not decreased but at the same time, it has not increased also. So that would mean that Exjade is taking out all the new iron entering her body through transfusions and the SF is showing all the previous deposits - and that would take time to chealate- that is her doctors opinion.
Please could you tell me where you are locate and who is your son's doctor?
Shikha
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Hi Shikha,
We are located in Fresno, Ca. My son has a good doctor, but he does not specialize in thal, I believe there's only a couple other kids here with thal. I too been reading the different posts regarding exjade with desferral, and am also concerned. I will make sure to discuss this with our doctor at our upcoming appointment. We go on the 26th, I will inform everyone as to what he tells us.
Our problem with exjade is the fact that ferritin levels are not accurate for him, so we really don't know if its working yet or not. Because he has a bad liver the only way we have of knowing if it's working is thru his liver biopsies. He's do for his annual one next month, however it will probably be too soon to know, so his doctor is wanting to do a biopsy every 6months, which I'm not happy about, but I will do whatever it takes to get him of off desf. for good.
What dose of exjade is your daughter on? Do you know if it's working? Was she on desf. daily?
I'm so glad to come across other parents that have the same struggles as I do. No one can understand how difficult it is unless they experience it. The suffering that these kids go thru every day of their life. My son has asked me many times why him, and it's so hard for me to answer because I too many times ask myself that question. All I know is that exjade will make his life so much easier, and berable. I think exjade is a miracle for all thal patients and I hope everyone can have it and benefit from it.
take care,
Lily
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Our problem with exjade is the fact that ferritin levels are not accurate for him, so we really don't know if its working yet or not. Because he has a bad liver the only way we have of knowing if it's working is thru his liver biopsies. He's do for his annual one next month, however it will probably be too soon to know, so his doctor is wanting to do a biopsy every 6months, which I'm not happy about, but I will do whatever it takes to get him of off desf. for good.
Hi Lily,
A couple of suggestions regarding measuring body iron ...... Ferritin is still the most accurate test we have for measuring "blood iron" but it is erratic to say the least, for almost everybody. So, wouldn't worry too much abt that - the important thing is not the number (mostly) but the direction. Liver iron is also not a very good measure of how much total iron is deposited in the body, as it can get deposited elsewhere, too, but again indicative. You want to combine it with an annual test for heart function (2D echo, etc). Finally, instead of biopsies, I would suggest using MRIs as a non-invasive manner of checking liver function and since it is non invasive, do it quarterly if you wish. And, in a separate thread on this forum, you can also read up on Ferriscan, which is essentially gives you a much better analysis of your normal MRI liver scan, which I think is now available in the USA.
In my opinion, MRIs are better than biopsies, in any case, because the biopsy needle pulls out a random tissue sample from the liver while the MRI scans the entire liver. Also, keep in mind, that a stable liver may not mean much since liver tissues take a lot of time to regenerate, if they ever do, but a deteriorating liver is a sure sign of inadequate chelation and you do not want to wait one year to find that out.
And, since you mentioned elsewhere that you live in CA, you may want to check out the SQUID machine, which is a non-invasive way to measure total body iron. One of the hospitals in CA have it (not sure whether it is SFO or elsewhere).
Take care,
Poirot
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Lily,
They do SQUID testing at the Children's Hospital in Oakland. I have had it done twice and it is not invasive at all. They have a great Thalassemia center there which I highly recommend going to for your son.They deal with Thalassemia everyday. I think Andy also recommended going there and I agree. Good luck, Jean
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Lily,
I agree with Jean. A return visit to CHO would be beneficial. Much has changed in thal treatment in the past 10 years and not all doctors keep up on all the advances.
Please refer to this page at
http://www.thalassemia.org/sections.php?sec=2&tab=10&
for a discussion of the importance of comprehensive care for thalassemia. CHO is one of only six hospitals in the US offering this program.
The SQUID test would be able to give an accurate measure of iron levels in the liver. You can also now have ferriscan screening done at CHO and this does give a very accurate 3-D image of the iron concentrations in the liver.
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Thanks everyone,
As you mentioned poirot, I agree that the MRI is less invasive than the bx and I would love it if we could go that route. Unfortanetly they've tried it and because of the stage of the fibrosis in the liver it doesn't work for us.
As Jean and Andy mentioned I think we should take another trip to CHO. I will talk to our doctor at our next appointment about it. I'm also interested in this SQUID testing you all are talking about, I have never heard of it. I never knew there was so many new advances in thal. Since there's only a couple of thals in fresno, the doctor here just treats the disease but doesn't really tell us whats new and whats happening with thal.
I thought I was well educated in thal, but I'm seeing just how clueless I really am. However that's all going to change now that I've met all of you. I'm now going to be more insistant with his doctor and as i'm learning from you guys, I will be asking alot more questions. Thank you
Take care,
Lily
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Way to go Lily --> Being well informed and knowing what are the options keeps the doctor's more aware and might NOT resist about talking about what they know even if it is a little technical for us.
It would be a good idea to write notes what you want to talk with the doctor before you get in his office. (You might already be doing it, but this is something I liked from someone's recommendations in one of the other posts). This is because we tend to forget when we are at the doctor's office
Take Care,
-Narendra