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Infusion
Feb 5, 2009
Hi I am new here-first time writer & want to say thanks for all your helpful responses as I had my first iron infusion-in a very small dose-2 days ago- as I had severe reactions to other types of infusions.
Just sharing your thoughts has helped me with my aches, pains & severe head ache today! Yes I got the leg pains & a little heart trouble the first night but was fortifide with meds to help with that BUT I did not expect the flu like pains & misery today-but hearing it is common among you was a help. I did let the nurse know my dillemas.
Thanks for being there & I will be having another treatment each week in these small doses & will be prepared next week-I hope.
I will be in touch after that & compare my days.
Re: Infusion
Feb 10, 2009
Hi -thanks for the "welcome" & I am going for the second infusion today & after the 3 days of misery & the last treatment I started to feel better again. I am 'pooped" all the time but I will keep you updated as this week progresses. Good to hear from you-again thanks!
Re: Infusion
Feb 21, 2009
[QUOTE=seamist;3875821]Hi I am new here-first time writer & want to say thanks for all your helpful responses as I had my first iron infusion-in a very small dose-2 days ago- as I had severe reactions to other types of infusions.
Just sharing your thoughts has helped me with my aches, pains & severe head ache today! Yes I got the leg pains & a little heart trouble the first night but was fortifide with meds to help with that BUT I did not expect the flu like pains & misery today-but hearing it is common among you was a help. I did let the nurse know my dillemas.
Thanks for being there & I will be having another treatment each week in these small doses & will be prepared next week-I hope.
I will be in touch after that & compare my days.[/QUOTE]
I had 2nd iron infusion 2/10{different formula} & came home & then an hour later I ended up in the hospital for 4 days-as heart kicked up & also had a heart cath. done. This formula won't be used again! Due to the doctor being away this week-I have to wait untill 2/24 now & see him first etc.-due to reaction!
Have any of you folks had the shaky inside feeling, absolutely weak & can hardly make my stairs this week-just curious?
Re: Infusion
Feb 21, 2009
Hi,

Can I ask which Iron you are getting? How do they prepare you & if they prepare people ahead of time why is it so many get bad reactions still?

Also, if you dont mind, what was your hemoglbn before your Dr ordered IV?

THX a bunch & I wish you good future Infusions.
Re: Infusion
Feb 22, 2009
Hi-You asked how they prepared me-do you mean with the bags of "side effects" meds? This time it was benedryl & hydrocortisone & iron. As to what kind of iron-I will ask again as so much info was given me-now I feel dumb!
It will be this tuesday I see the doctor & labs before & I have lots of questions. I am usually on top of all these things. Any more I should ask? Please feel free to inform me-thanks for your replies!
Re: Infusion
Jun 16, 2009
Hi all-I am finally back-had several iron infusions-one a week in small doses as bad flu like reactions etc for 3-4 days after each. I now waited 3 weeks to test again-I was finally at 30 BUT today I was told way down to 9 & more iron infusions asap now.Tests show no blood internal loss etc but marrow shows bone not making any either....very discouraging to feel so much lack of energy for such a long time. My immune is also very low & I get infections a lot & get put on antibioticcs fast-to curb these.
Having my daughters wedding in 10 days-I am holding off on the infusion until day after that.
Have any of you had the same problems of losing your iron & no reason?
Yes I have been on oral iron at first-way back-not successful & I have to hold off on the immune infusions again as the iron so low-HELP!
I have been searching the web BUT I will question the hemotologist more.
I go to Dana Farber & love the doctor & trust him but WHY????
Sorry to spout off tonight folks-I guess I wasn't prepared for this clout!
Re: Infusion
Jun 19, 2009
[QUOTE=seamist;3875821]Hi I am new here-first time writer & want to say thanks for all your helpful responses as I had my first iron infusion-in a very small dose-2 days ago- as I had severe reactions to other types of infusions.
Just sharing your thoughts has helped me with my aches, pains & severe head ache today! Yes I got the leg pains & a little heart trouble the first night but was fortifide with meds to help with that BUT I did not expect the flu like pains & misery today-but hearing it is common among you was a help. I did let the nurse know my dillemas.
Thanks for being there & I will be having another treatment each week in these small doses & will be prepared next week-I hope.
I will be in touch after that & compare my days.[/QUOTE]

May I ask what formula they used and what the small dose consisted of...how much and how often? And with the small dose, you didn't have reactions?

Also, do you recall what the formula and dose was when you did have the horrible side effects?

I'm about to have infusions, so researching what will work best. It seems the smaller dose (whatever that is) is more compatible to the body.

Any help you can give me on this is sincerely appreciated. It's all so traumatic and not knowing what to expect or possibly having a better idea of what I can do to help the process.

How do you feel now? I hope it's much better for you.

Thank you,
joisbelle
Re: Infusion
Jun 23, 2009
[QUOTE=seamist;4017447]joisbelle--Welcome to the sight!

I am still fumbling through this site & trying to figure out the correct way to reply etc.
You asked what type of Iron-well there are 4 kinds-check "google" & they will explain all for you.
I was on oral iron & the body would not hold in my body-thus the infusions!
One full dose of the oral ferrous sulfate & other bags of infredients, caused fluid problems & heart for me & had to be hospitlaized.
Now I am on a second kind & it is split in 5 smaller doses & sodium poor-they call it-I still react as flu like aches, pains, headache & flushing of face {the next day} & they give me a bag of Zantac for the nausea. I am probabaly the wrong one to ask as my body is not holding this last set of iron & we start in 8 days with a new one again!
I guess I am the "problem child" syndrome for them.
These treatments are done at Dana Farber Cancer Center & they are great & make it very pleasant & I have the head doctor for my hemocolgist/oncologist....HOPE is what you need & as others pick up on your posting I am sure it will help too-it did for me as I was not alone & they share what happens etc.
As I start treatments again -I plan each week for easy on tummy meals {low salt} to have in,no commitments etc & read books, watch tv & rest for 3-4days. This was not easy for me as I was still working but you do what you have to -tylenol,pain meds if need be...not often...warm wrap around the body helps.

On QVC I purchased a therapudic type wrap-called from Grampas Garden from ME-you can chill it or microwave heat it & so comforting! Full of beans or herbs-so many of my friends use it for many things too-we all love it.
May you have great success & let me know how things go-when are you starting? Do you have little ones to care for?
Please keep in touch & good luck!

seamist ;)[/QUOTE]

Thanks Seamist for your reply and all the info....you have been through a lot as have so many, and it's so difficult getting the right information at the right time, and wondering if the iron pills are working or not, and then the infusions that one must have if numbers continue to go down.


I'm going in for a hysterectomy this coming Wednesday, and the Dr wanted me to get infused over the weekend, but I said No, as I didn't know what to expect as far as side effects and didn't want to go through it all and be down before surgery, so he has decided that it's best if they infuse me right before surgery when I'm sedated, but not quite all the way out for the surgery, if that makes sense. I wonder if anyone on the board has had it done that way.

I look at it this way....I will be asleep and in the hospital for 3 to 5 days, and if there is a reaction, it will show up while in there and out of it most of the time anyway, or at least on meds. Is my thinking correct? Anyone's comments are helpful. In a blind alley on this one, so taking my chances.

Does anyone know how much 1 unit will pull up the hemoglobin number, or as my Dr looks at is Hemocrit. Why they all look at different numbers is odd to me. My hemoglobin is 7.4 and hemocrit is 25.6. Thoughts?

I wish you all well and thank you for the information as this board is wonderful. Thanks to all and keep posting.

joisbelle:wave:
Re: Infusion
Jul 29, 2009
Hello Everyone!

Thank you for caring and sorry I didn't answer all of your replies sooner.

I had hysterectomy on 6/24 and was in the hospital for seven days. While in pre-op in hospital, and out of it, I was given two units of blood through transfusion. Prior to surgery, hemoglobin was 7.4. and the two units brought it to 9.5. Then after surgery, it went down again to around 8 something and refused to go up. However, as of last week's blood workup, it was 10.7, so hopefully on an upswing. Prior to surgery, my iron level was around 19, and now 118, so go figure. I am not taking iron at this time and haven't since prior to 6/24.

As so many of you have said, when he problem is gone (blood loss from fibroids), numbers start going in opposite direction.

Thanks so much for caring, and if I can answer any questions, please fire away. :)

joisbelle





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