01.31.07
Desferal
While rummaging through my closet today, I ran into a bag of my old Desferal infusion supplies. I know that Desferal isn’t technically a “natural” treatment, but I was not able to find anything else that could keep up with my iron overload while transfusion dependent. So, I did use it. The one consolation I had about it was that it is not a drug designed to “alter” cellular function or other functions of my body. Desferal is basically a chelating agent used to escort iron out along with itself, not designed to induce growth or suppress cells, or trick the body into anything.
Since there has been discussion of iron overload on the blood forums in relation to possible trouble with Exjade, I thought I might post some pictures of the Desferal delivery equipment for those curious about it. It’s quite small and compact, really. Below is a picture of what a Grasby pump looks like. There are several types of delivery systems. I tried two different types, but I liked the Grasby best.
Below is another picture of what the Grasby looks like with the syring loaded on. It’s shown on a stand, but it doesn’t need one if you want to just carry it around your waist in a little pouch.
The tubing and the needle that attaches to the pump is quite small in comparison to all the other needles we blood people tend to get poked with. The tubing is long, so there can be plenty of space between you and the pump. I used to sleep while I got my infusions, so I could just leave the pump on the floor while I slept in my bed. When I woke up in the morning, I would disconnect and be free of it. The needle used to attach to you can be very small depending upon which set up you get. The sub-q needles I used were 27gauge (tinier than the 24 gauge pediatric needles), and only 6mm long and had a little clear plastic disk attached so that the needle could lie flat underneath the tagaderm. below is a picture of the set up I used.
Only one needle and tubing is used at a time. I just put these three on here so that both the front and the back of the packaging can be seen as well as what the tubing and tagaderm look like. Below is a closer picture of the sub-q needle. The small clear plastic disk can be seen as well as an idea of the size of the needle.
If delivering your own Desferal, the pharmacy will likely give you a medical biohazard container for the disposal of used needles. As tiny as these sub-q needles are, they should not be thrown in the regular waste can. When the container gets full, they will collect it and dispose of it for you.
It’s been over 5 1/2 years since I used one of these. I forgot I still had these in my closet.
Marlakins
patti said,
February 1, 2007 at 5:03 pm
Marla,
Thanks for showing all this stuff! As we will be addressing the desferal issue on Tuesday at mom’s doc I’ve been wondering how to make this most palatable for mom. She doesn’t want to sleep with it because she feels like it will keep her from sleeping well (old age, I guess). I suggested she could wear it in a fanny pack and have it go all day just three days a week. Her concern with that is that her picc is in her right arm which is the arm she does everything with. How will she cook, wash dishes (she does them all by hand – don’t even get me started on that one!), etc.? I feel like she’s put obstacles in my way to getting her there that are almost insurmountable. She’s not happy that she might have to have home health care come and get her set up because I can’t do that 6 times a week (twice a day) and flush her, etc and still keep my home running. Grrrr. This is just getting frustrating. I have actually told her that the other option is to just do nothing. Opinions on that option???
patti
Andrea said,
February 1, 2007 at 5:08 pm
Marla, How does Exjade “trick” the body? Just curious. Andrea
Administrator said,
February 1, 2007 at 6:28 pm
Hi Andrea:
I’m not sure Exjade “tricks” the body(I was referring to other drugs such as some chemos like methotrexate, which mimic folate and thus the cells allow the drug to enter. There are other drugs like this), although I have a suspicion Exjade is interfering with some processes that affect other parts of the body. From some of the claims that Exjade has rendered Revlimd and Neupogen ineffective, there seems to be some correlation to interference of some sort. It’s a new drug, and I haven’t been able to see the write up on it as to how it works. Desferal, on the other hand has been around for much longer, and I haven’t read or heard of any examples of it having too horrible side effects so long as the ferritin levels are above 800. I’ve read that once the ferritin levels go below 800, then side effects are more common. My “guess” at that point, is that there isn’t enough ferritin for the Desferal to pick up, and possibly, it starts chelating other minerals, which allows side effects like hearing loss and vision problems to crop up. That’s my suspicion. If that is the case, then the side effects are in a sense malnutrition related. (mineral imbalance) Normally, chelators like desferal, EDTA, etc. are designed to “grab” unbound minerals like copper, lead, iron, etc. and then leave with it. They aren’t usually designed to disrupt cellular function and enter the cells themselves or activate or disrupt hormones. Chelators do not normally remove metals that have already been incorporated in the cells, but only those that are unbound or have a lose bind. That’s why taking vit C helps desferal because vit C helps to mobilize bound iron into ferritin. I.e. desferal picks up ferritin (fe3), but not iron (fe2).
What’s going on with Exjade, I don’t know. That’s part of the risk when trying out new drugs. Having said that, there are some drugs where the side effects do cause the patient to lose minerals like some diuretics make the patient lose sodium and potassium. But the mechanism for that as I understand it is diuretics block particular enzymes which allow the body to reabsorb sodium and potassium (because they are related to fluid retention). I wonder if the mechanism for Exjade is similiar in that it interferes with some enzyme or hormone that allows the body to recycle iron? Now, if that’s the case, then I can see how Exjade can also interfere with the action of other drugs. In that case it is not a mere chelator, but and anti-enzyme or anti-hormone thing. That’s the way I see it.
Marla
Administrator said,
February 1, 2007 at 6:38 pm
Hi Patti:
I’ve been thinking of your MIL lately regarding the discussion of her possibly forgoing an iron chelator. I was thinking that she has every right to choose not to chelate. I held off until I reached over 2100 even though my doctor told me I should go on it once I passed 1000. So I realise I have a stubborn streak myself, but I had to get to a point where “I” was comfortable with the idea of poking myself and purposefully putting that stuff in me. My feeling is to discuss it with your MIL, and then let her decide which way she wants to go. She’s her own person, and I can see that even the things I prefer for myself, she does not–i.e. her picc line. She’s fine with it, I hated it. The orange pee with the desferal, you say she would just hate, but I liked it cause I could “see” progress. I preferred to sleep while the infusion is going cause I hated to be tied down and know it was there, but your MIL prefers to do it in the day. We’re different people. If she wants to take a break from chelating and see how she feels, then she can pick up the option to do it later. But at this point, I think it is important to let her make the decision for herself, if that’s what she wants. Let her know that she doesn’t “HAVE” to do anything to be pleasing. I would let her choose. I think there’s some dignity in that as well that she has some control over her own body, and we don’t have to judge her choice as wrong or right.
Just my 2 cents,
Marla
Administrator said,
February 1, 2007 at 7:42 pm
Patti:
One other thought is would it be better for you if your MIL came to your place to hook her up and disconnect, instead of you going to her place? That would save you the travel time and you wouldn’t even have to leave your home. Or is it too far away? And can she get around well enough to make it to your place? It would only take but 5 minutes or less to get it going, and even less than that to disconnect.
Just a thought,
Marla
patti said,
February 1, 2007 at 8:07 pm
All good thoughts, Marla. Mom definately will make this decision but sometimes she makes decisions by default by not making a decision and then gets mad at us for not “forcing” or “pushing” her to do something. We can’t win for losing in most situations. Seriously. Yes, she *could* drive here and let me do the hook ups, etc. We’re 3 blocks away. But she won’t. She would rather forgo it then have to get out and drive for it. So it’s either going to be me doing or home health (which I’m almost certain will just make her say no). Also, she will not drive in the dark at all which would be a problem right now. It probably only takes 5 minutes to hook up/take off but by the time I flush, check everything else out (picc dressing,etc), she grabs me for personal questions (bills, etc), 5 minutes turns into an hour. I’m really not trying to be lazy here. But if she finishes at 8:00pm she would expect me to be standing on her doorstep in less then two minutes. I am not exaggerating. What if I’m putting my kids down to bed (which happens to be 8:00pm)? The other day she called and wanted Ron to look at her car battery. She wasn’t going anywhere that day, but she wanted it done now! There are times we tell her she’s just going to have to wait but there are other times when she’s so demanding that not to do it would be the wrath of her when we get there. She is not an unreasonable women (at least not until this past year or so) and I think most of this stuff is old age and/or brain malfunction. But you can see the dilemma we’re in. I could go on and on but I’ll stop because then it’ll get my blood boiling and that really serves no purpose. I try to just remember she’s an old lady that she’s set in her ways and she expects everyone to do things in her timing. But I hate it when she makes decisions by default of not making a decision and then gets mad at us. I’ve already told her the options are to do the desferal or just let the iron overload go. Period. She wanted to know what would happen if she let it go. I told her it would probably continue to affect her kidneys and liver as it has already. She asked about how I could tell it was affecting her liver and I told her it was just obvious because quite frankly I really didn’t want to tell her she smells bad sometimes! So she knows what the risks are. But I do have to ask myself – how long would it really take for damage to be so bad it would take her life? Because in comparison to how much time she’d have left from a disease standpoint, would it be a mute point? I don’t know. Do you?
Thanks for the discussion. I am going to print out what your wrote about the desferal and give it to her to read. Also, maybe seeing it will help her also.
patti
Administrator said,
February 3, 2007 at 10:53 pm
Oh my, Patti, okay I can see your dilemma. It is hard dealing with people who can’t make up their minds. . . I’m speechless, ha!
Regarding how long it would take damage to occur from iron overload is hard to say. Some people seem to get affected sooner than others. From the excessiron list, there are people who seem to get damage with ferritin levels in their 600s, while you have others who are in the thousands who don’t seem to notice any problems at all. I’m guessing part of it has to do with where your achillies heel is as to what organ would succumb and how long it would take. Also how well the person’s organs were to start with and what other health issues are going on.
Regarding brain function and old age, I tend to think that a person can get old without going mental. I know some 80 year olds who are very lucid. True there are many who are not, but I think the root to that is some other cause “combined” with age. But not age alone. I really don’t look forward to being considered a senile old lady! Ha ha ha! Hopefully if that ever happens, I won’t know about it or can’t remember it, ha!
Well, okay, hope your Tues appt. goes well.
Marla