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[QUOTE=Mom2JAM;2856705]Hi Mary and all,

My understanding is that the ferritin measures your iron stores...your body will be anemic but as long as the ferritin # are 'normal' then dr's will assume you are fine. Your body will use its own iron stores if it can't absorb iron.
That won't show until your ferritin drops. The lab report showed the normal range of ferritin to be anywhere from 3 - 720 or something like that and mine was 7. The nurse chimed, "See, you are in the normal range! You can't be anemic!" To which I said...:rolleyes: "Being 7 notches above the ground is not good...when I could be, oh....a couple hundred above where I am now and might feel a huge difference!"

I can't remember how I found this oncologist/hematologist but, he said to rule out any internal bleeding first by having the upper and lower GI and I went on bcp to stop my periods (very light anyway)and after the other tests showed no internal bleeding...he said that I must just not be able to absorb iron through my IV was a great option.

I don't get some dr's reaction as tho' it is liquid gold and they guard it as tho' they don't want to share. Find a hematologist and have them get pre-approval from the insurance company for the IV's. The shame is that so many dr's only trust labs and not the info shared by the patient...I love dr's who look at the patient and ask about the symptoms and trust that more than the labs.

The other thing about the changes I have had is that after the second treatment, I ate ice for a few days and after desire AT ALL. Ice tastes strange to me and I have no desire to chew it. This from the woman who ate 20lb bags of 'the right kind of ice' from stores that had the best ice.

Oh, and I am not sure what iron he used...he said it rarely has side effects but they do the benedryl as a precaution.
Let me know if I can answer any other questions.


OK, I was just here to read the messages, find some information before I go for my first iron infusion tomorrow afternoon (and yes, I am nervous (read that scared poopless), and had no intention whatsoever of actually posting, but after reading the "20lb bags of 'the right kind of ice' from the stores that had the best ice." quote, I laughed out loud (and co-workers peeked from around cubicle walls to see what I was doing). I buy the "right kind of ice" from the "crunchy-ice store" (better known as Sonic) and go through the bags at a rate of 5-6 a week. I wake up craving it. I go to sleep eating it. I have fallen asleep with a cup of ice in my hand to awaken with a lap full of ice water! I am not so sure I want the ice to have a funny taste! I like this addiction! But I really want to feel better. I want to have the energy I used to have. I want to be able to go for a bike ride with my daughter and not have to take a 2 hour nap after going riding for an hour. I hate only being able to clean one room of my house at a time and then having to sit down to rest before tackling the next room. This is not living! The side effects concern me, but given the alternative, I can live with a few aches and pains if this is the cure that will improve my quality of life.

I do have a few questions...

1) How many times in a 'series' can one expect to go before levels come up to normal? (range)

2) Is it normal to pre-medicate with Benadryl before going for an IV Infusion?

3) I believe the doctor has ordered 500mg Venofer for tomorrow, and the Infusion center told me it would take 4 hours...yet everything I have read here indicates much less time...any thoughts?

Thanks for any input anyone has...

*KEEPING MY FINGERS CROSSED AND MY HOPES HIGH...and the cup of ice close by!*
7/29/2007 ~ 9:30pm

I went for the IV Iron Infusion on Friday. I am lucky, my fiance is an RN, so he started the IV. The bag was 500mg Venofer, which, after about 20 minutes, they decided there was no way I was going to be able to handle it in the vein in my hand, so he removed it and started it in my arm. They hung a bag of saline with it, and diluted it 50/50 saline/iron, which made it MUCH BETTER. The nurses in the infusion center said the iron is very irritating to the veins, and therefore, can cause pain at the injection site, and further along the vein.

It took a little over 5 hours for all of the iron to go in (they had estimated it at 4). I felt nauseated towards the end, and a little achy. The strangest side effect was when I tried to put on my shoes...within seconds of putting them on it felt like I had slid my feet into hot coals! I popped my shoes and socks off and my feet were hives...and they hurt like they were on fire. I didn't wear shoes home, and the only shoes I have been able to wear have been my Crocs. I was achy this weekend, mostly a really bad back ache. So far, I am not feeling like a "new woman" yet, but I understand it could take up to four weeks before I start feeling better. I am supposed to go in to get another 500mg in two weeks. Will let you know how that one goes, and if I start feeling any better...would love a burst of energy about right NOW! :bouncing:

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