No rant JUST the facts...
 

Skipping the rant and cutting to the facts/question. (*And there is a big rant to the tune of 20 days of me saying something is not right).

My iron reserve is very low. (Total iron value = 13 ug/dl. Normal range is 37-170). *NO COMMENT.

Has anyone had iron infusions? I'm waiting to hear back from my NP but she mentioned getting IV iron for quicker results on levels.

Just wondered what the near-death side effects are, if any?

I know it won't kill me but betting it will do more than boost my energy...

SoCalGalzzzzzzz

Re: No rant JUST the facts...
 

Sorry to hear that. Must have an effect on your stamina/energy level.
Some people take a "gentle iron" supplement. There are some that do not cause as much constipation, which is that main side effect that I know of.

Get on a diet with raisins and spinach, etc,

But WHY is your iron so low?????

Re: No rant JUST the facts...
 

I got 3 or 4 treatments of IV iron when mine was low. It seemed to help, and I don't recall any bad side effects.

Re: No rant JUST the facts...
 

I've had two different types of IV iron, Venofer and Injectafer. Both drugs are for iron deficient anemia, but if I remember right, I did at least four infusions of Venofer and only two of Injectafer to get the same result. I definitely remember liking Injectafer much better than Venofer. Not only did Injectafer require fewer infusions, it also left me with no side-effects. Venofer, however, left me with Zofran plus Ativan level nausea and sparkling-migraines (the kind of migraine where any light through your eyes makes your head feel like it will explode, but you still see bright sparkles when you close your eyes, so eyes open or closed your head still explodes). I don't think I had pre-meds with either Venofer or Injectafer, but that could be because I dropped Decadron and Benedryl, due to their side-effects and no allergic reactions, after my second or third chemo infusion. I do remember getting a "thorough flush" with a bag of fluids after each infusion of either drug. I also remember starting to feel better within a week or so of the first infusion. Hope you're feeling better soon!

Re: No rant JUST the facts...
 

Whoa! Hope iron stats go up soon! Sending good wishes!

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I'm so sorry that you are having low iron issues. I remember when I had this issue I was able to resolve it by taking over the counter iron supplements. It turned out I had a diseased (not cancer) uterus that was causing the problem. Taking the supplement did finally give me some energy back so it was worth the constipation that taking them causes. However, I'd want to determine WHY you have low iron? Do they know? Is this common?

Good luck to you. I totally understand the "zzzz" after your name!

Take Care,
Brenda

Re: No rant JUST the facts...
 

Sheesh, it's a wonder you are upright and walking. I wonder how it go so low. I have no experience with Iron infusions. I hope they get to the bottom of your depletion and get you pumped back up ASAP.

Re: No rant JUST the facts...
 

Flori-girl,

Man, I've got nothin' in the iron advise column, however I can just picture you high kicking after you get those levels up. You must be acclimated in some fashion to abysmally low iron levels to be moving about without your knuckles dragging! I suppose it is all the years of continuous treatment wear and tear that has dropped your iron stores. Sure hope a gas up will get you running on all four cylinders again!

Re: No rant JUST the facts...
 

I see the ONC next week to get answers to the WHY part. If I had to guess, I'd say a whammy combo of (Hel-lloooo) Radiation to L1 in January, Spine surgery in March, and then, ahem, poor absorption in my intestines due to cancer related colitis and also probably some degree of celiac/gluten intolerance.

I'm mostly mad that I've been reporting annoying side effects since my return from NYC in JULY. Like the most chapped feeling lips which I've never had, dry itchy skin which I'd never had, horrible dry hair, etc. Not to mention my always chant of extreme fatigue.

The bruising started three weeks ago, plus the can't catch my breath complaint. AND a strong email to my team that said my mom dropped dead of a lung embolism because everyone was focused on post-polio stuff during the two doctor visits the week before she dropped dead at age 57.

My email went on to say could they stop focusing on cancer, and try to figure out what else could be making me feel so awful?!

Anyhow - finally my NP thought to check my iron reserves, which hadn't been checked for 2 years, and they were low normal back then. I was unaware and didn't even know of this test let alone the test result, or of course I would have followed up about 18 months ago, before I felt this shitty!!!

I can barely communicate/articulate a verbal thought. My typing seems okay, though.

Off to get my first infusion of Venofer. I hope @Margaret you are mixing memories of the two, with regards to side effects. My NP said just the opposite as far as s/e's go. You are correct in that you can get one or two shots of the other, but for me, they want to so slowly since I always seem to get a weird thingy. I am hoping and hoping and hoping that today goes smoothly and I don't wind up feeling sick tonight. But OMG I am just barely able to move - scary feeling. I still have a couple things to do before I check out for good!!!!!

xoxo
Flori

Re: No rant JUST the facts...
 

Praying this goes so slowly you wind up laughing with pleasure and feel remarkably improved when you rise tomorrow morning. I have no idea how you are even vertical, Flori. Sheesh, you are one tough cookie! Praying you get down right perky very soon!

Re: No rant JUST the facts...
 

Fingers crossed for a great response and NO side effects. Dance on, lady.

Re: No rant JUST the facts...
 

Checking in, Flori! Hoping you are just feeling so much perkier that you haven't had time to let us know how things are going.

Re: No rant JUST the facts...
 

Ferritin Bueller's Day off...
Found out my ferritin is down to 6!!!!
I think the normal range for women is 11-300. Healthy people are in the hundreds that's for sure!!

I cannot believe I just pushed on, even tho I was complaining to the NP, etc., I was still pushing. It really shows how much we THINK we have to endure, suck up, push through - so much of how I've been feeling has been chalked up to 9+ years on continuous treatment and now I think it's been low iron reserves. Will be interesting to see how much better I might feel once my levels are back up. It takes a couple of months for our bodies to re-store as I understand.

Anyhow--
So far, so good. Had two Venofer infusions and am feeling better than I was, at least I can catch my breath. No terrible side effects, other than metallic taste during infusion, and tummy sour here and there, overall nothing too bad. I'm still anxious as can be when I go for the infusions, it's just like I'm tapped out on emotional management skills. (Luckily I haven't tapped out on Ativanish) But no bad side effects so I'm VERY VERY THANKFUL for that!!

Hope everyone is well (enough) and enjoying the weekend. I am glad to be back on the healing track.
xo xo xo xo
Flori

Re: No rant JUST the facts...
 

Look out world when Flori becomes bright eyed and bushy tailed again!!!! Happy for ya, Flori!

Re: No rant JUST the facts...
 

So glad the infusions seem to be working!

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You're going to be a powerhouse when you are restored. I'm glad you are feeling better already but it does upset me to hear that you are struggling emotionally. Thanks the pharms for Ativan.
Rest, restore and paint a pretty picture.
XOXO

Re: No rant JUST the facts...
 

Flori, you ROCK!! I am so glad the infusions are working for you ... when they really kick in, you will be even MORE unstoppable!!

xo xo xo right back at ya!

Carol Ann

Re: No rant JUST the facts...
 

Flori,

I'm so sorry for your troubles, especially the troubles with getting the medical people to listen when you tell them something's wrong. And I'm glad treatment seems to be helping, with not too many adverse effects.

Love to you,

Amy

Re: No rant JUST the facts...
 

Dear SoCal,

I have a similar problem. Neither one of my oncs would give any credence to my loss of hair and fatigue and whining about just not feeling right. Took blood levels and said I wasn't anemic (although I was anemic previously, post chemo). The levels were low, 11-13 and pre chemo I had been in a much higher range. My PCP finally looked into it and ordered a TIBC, which showed my body was low on iron. I've been on prescription iron and the levels have increased, albeit slowly, from 9 to 55 and I feel so much better, and will likely stay on a lower dose for the duration as my iron drops without it. Had a colonoscopy, but they don't know why the levels drop. Personally I feel it is one of cancer's gifts, just as my osteopenia was (which calcium has resolved)
Infusion was mentioned, but thought I'd try the pills first as I'm prone to migraines. Ironically (pun intended), the pills have the opposite effect on my digestive system than most folks.
Hope you feel better!