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Anemia, dang it

Oct 26, 2011 - 25 comments
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anemia



Worse than some, better than some......an old expression to remind one's self to keep things in perspective.  There will always be someone better off, and always be someone worse off than me.  It's how I handle the middle that counts.

(Doing triple tx with Victrelis) Today I did my week 8 labs, and my nurse had me have the lab do the CBC/ platelet /diff -- STAT.  She called me after work with the results: HGB - 9.1; Hemocrit - 28.  So...Anemia. Women's minimum should generally be around 12; men should be 14; anything below a 10 is concern for Anemia.  Too early for the Viral Load results, but she said everything else looked okay.  She spoke to my doc and based on my situation (my age, probably my race, my pre-existing issues), they decided to reduce the RIBA until Halloween, which is my next appointment.  Most likely, I will re-do labs that day to see how I am doing, plus they want me to feel better between now and then because.......it's almost that time of the month.  (I know, TMI......but if this can help someone else in the future...) The reason this is a factor is because my past 3 labs have been done (ironically) at that time, so my HGB would be expected to be lower anyway.  And since I am fatigued, weak (on and off), have brain fog now (confusion, forgetfulness and lack of concentration), and have Vertigo, the first plan is to reduce.  We also talked about the possibility of blood transfusion.  The nurse told me that the FDA has red flags about Procrit for patients other than those on Chemo.  She wasn't saying "no" but wanted to let me know, and of course, everything will be up to my doc.

I am really pleased that I have made it this far without major sides, though the cactus butt was NO fun!!  LOL.  Because I have to do my 9-5 through this, I have to keep my strength up if I can.  This is still way, way early in the process.  I look forward to the rest of this week because I know I will feel better and be able to re-group.  From here, I expect they/I will also time my labs differently to avoid that time of the month.

UPDATE: Oct. 28, 2011
Feeling much better this morning.  Wuuu whuuu!!  My guess is that it is a combination of things: RIBA dose reduction; been forcing meat and spinach the past couple of days; I generally feel better on Fridays; and went to the Chripractor on Wednesday for an adjustment to help with Vertigo.  I have been able to focus pretty well this morning, and hope it continues.  Shot #9 is tonight, then follow up visit with my doc on Monday, to see where we go from there.

UPDATE -- October 31, 2011
Still not sure what path we will take just yet.  Feeling much, much better with the dose reduction, But still want to increase it again soon.  Re-did CBCs today and will know the results tomorrow.  Chances are, when they do increase my dose, it will be in increments, so as not to shock my body.

My doc says what they are finding is that more and more, people are not handling the RIBA amounts, which are weight based.  But that even with reductions, the RIBA is still doing its job.  They are having to do even more transfusions than expected, with patients on both Incivek and Victrelis.  Every body's tolerance for Anemia is different, so they are gaging each case individually (within limits of course).  Kinda makes sense.  As much as I would love to go right back up, I don't want to go right back where I was.  All the other sides I have experienced have been somewhat manageable, but the Anemia -- I had no control over that and just kept feeling worse and worse.   Can-Do-Man said I could be Anemic from here on out.  So I made certain to express my concerns to my doc and let her know I want to make sure I have THE best chances for reaching SVR, especially given the African American factor.  She said that was her goal too, and I know she and her team are on top of it.  Praying for the best.  Thanks for stopping by :)

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DECEMBER UPDATE! ...... It has been a long road since I first posted this.

Anemic at the end of October, RIBA & PEG reductions; Transfusion in November; December RIBA increase; Procrit added; HGB is back up to 11.7.  YAAAYYYY!!  Doing one more shot of Procrit tonight and that should put me back to where I started pre-tx.  Very, very thankful not to be struggling with Anemia right now.  This is week 17 for me.  11 more weeks to go, with a possibility of a bit longer since I had a slight breakthrough at week 12.

Thanks everyone for your encouragement and support.
Bee


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by jerialice, Oct 26, 2011
girl you hang in there- you are so brave to keep working, i just couldn't! but i am going to be trying a diff combo here soon----
ja

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by Vannh9, Oct 26, 2011
Bee,

I will be praying for your Anemia to get better. I am using YOU for my role model for work:-) I am determined to stay on that train too.....have too. I think of you often and hope all of your SE diminish and that desired UND comes soon.

Big Hug your way....

Vann

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by scoleman, Oct 26, 2011
I just wanted to let you know I'm concerned about your low HGB.  It takes a couple of weeks for procrit to take effect so you might want get it pre approved now.  

If you feel worse please contact your doc to have your another CBC done.  

I can't imagine working full-time while treating and those of you who do are my heroes.

Take care, Sherry

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by beeblessed, Oct 26, 2011
Hi Sherry -- I'm way concerned about the numbers too, but I didn't start out that high to begin with, so we knew I didn't have far to go.  Definitely paying attention to everything right now.  Thanks :)

Hi Vann -- Thanks so much for the prayers.  I need them!!  I'm happy to be a role model to help others along this journey.  There are some sides that I have thought, "that's nowhere near what I expected," but as time goes on, I find myself thinking, "OOOO, THIS is what everyone was talking about!!"  If not for the guidance of this forum, I'd probably be a whole lot moree freaked out than I am.

Hi JeriAlice -- I work because it's almost the end of the year and I have no time off left, because of all the doctor's appointments this year, and vacations.  As much as I would Love to stay home some days, I would not want to do that the entire time, as I know I would get depressed and I would not get enough "movement" in my day.  So work does give me something to focus on other than myself.  Still, right now it is a challenge.

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by eureka254, Oct 26, 2011
Hi B...

Applauding you for being at 9 and still managing the 9 to 5... you bee warrior woman, wow!  

You mentioned "pre-existing" condition, and though it's scary to dose reduce, I don't know if you meant cardiac condition, but if so, probably good for caution's sake if you're dropping below 10.  I do agree with scoleman on checking on the Procrit sooner than later, though... you don't want to be off Riba too long so early in treatment, and though the FDA does have *flags*, Procrit is ok'd for hcv-treaters if hgb dips below 10, so at this point it shouldn't be a problem to get it prescribed.

If your doc prefers to give you transfusion as an alternative it will certainly give your hgb a boost in the short term, but it's really not a good long-term solution... but then, perhaps you'll only have to do 24 weeks...?  Hoping your sx minimize and that you feel better soon.  From my standpoint, you're attitude is all positive... you seem more than up to the challenge, blessed!  Best wishes. ~eureka

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by beeblessed, Oct 26, 2011
Hey Eureka!

No, cardiac conditions not among my issues, thankfully.  Thanks for all the info, it helps.  I agree with you about the RIBA.  Hopefully just a quick kick in the pants and then I can get back to a full dose.  Won't know about treatment duration so soon with VIC, because technically, even though this is my 8th week, it is only 4 with VIC, so the 12th week is crucial too.  And I think that is when they can know for sure how long I will be treating.  But yes....we are praying for UND at all levels, so my time will be shorter.  Blessings to you and yours.

Oh, you also pointed something out.  Blame my brain fog but I don't know why it hadn't occurred to me that 9.1 was so close to 8.something.  I just focused on it being under 10 and knew that was a problem.  Had a cheeseburger with spinach tonight, so I can "help" between now and Monday.

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by starshine1ca, Oct 28, 2011
Hi Beeblessed,

Just want to say hello...and let you know how inspired I am with you doing treatment and maintaining your job, even with the challenge of enemia.  You are very strong and I truly admire your attitude and strength.  I am on week three and doing a lead-in to the Boceprevir Nov. 8th, and already starting to be short breathed and a bit concerned.  I am not working, either. Yikes! :-) Wishing you an easy shot day and keeping you in my prayers.  

Sincerely, Anita

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by beeblessed, Oct 28, 2011
Hi Starshine :)

Between having no time left for the year, having no one to take care of me but me, and docs don't give disability for Hep C treatment -- I gotta stay employed to make sure the bills are paid.  Otherwise, I would be recuperating in the Caribbean somewhere, and fly back once a month for doctor visits.  Oh geez.  Now I wanna go!  Love to travel but have put it on hold until I am done.  I also tell people -- I work, so I can take vacation!

Sorry to hear you are short breathed even before the Victrelis.  Run that by your doctor to see if it is within normal range.  I am only noticeably short breathed now, and am sure that is due to the Anemia.  I will add you to my cyber friend prayers too.  Thanks for the easy shot wishes!  Same to you :)

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by sandysf, Oct 28, 2011
Bee,  Sorry to hear about your low hgb.. for me, the dose reduction in riba helped quite a bit within a couple of days, so you will see a difference I am sure.  I have been on 800 mg riba (from 1000) for 4 of the past 6 weeks.  I just tried to go back to full dose last week and it is day 7 and my body can't take anymore.  I am going back to 800 tomorrow.  I have 9 weeks left and I just don't know if I can keep full dose for the remaining weeks.  The good news I hear is that riba dose reduction with VIc doesn't seem to impact SVR.  Feel better!


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by beeblessed, Nov 01, 2011
UPDATE -- October 31, 2011
Still not sure what path we will take just yet.  Feeling much, much better with the dose reduction, But still want to increase it again soon.  Re-did CBCs today and will know the results tomorrow.  Chances are, when they do increase my dose, it will be in increments, so as not to shock my body.

My doc says what they are finding is that more and more, people are not handling the RIBA amounts, which are weight based.  But that even with reductions, the RIBA is still doing its job.  They are having to do even more transfusions than expected, with patients on both Incivek and Victrelis.  Every body's tolerance for Anemia is different, so they are gaging each case individually (within limits of course).  Kinda makes sense.  As much as I would love to go right back up, I don't want to go right back where I was.  All the other sides I have experienced have been somewhat manageable, but the Anemia -- I had no control over that and just kept feeling worse and worse.   Can-Do-Man said I could be Anemic from here on out.  So I made certain to express my concerns to my doc and let her know I want to make sure I have THE best chances for reaching SVR, especially given the African American factor.  She said that was her goal too, and I know she and her team are on top of it.  Praying for the best.  Thanks for stopping by :)

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by starshine1ca, Nov 01, 2011
Otherwise, I would be recuperating in the Caribbean somewhere, and fly back once a month for doctor visits.

Beeblessed,

Ohhh wouldn't that be a great way to do treatment...it's the least we all deserve..*smile*  That is one awesome goal to look forward to once this treatment is complete for you and you are SVR!  I wonder if they will ever get that Hep C treatment on the list for disabilities.  I was able to get Canada Pension Disability but only because I have cirrhosis, as well as long term depression. I too am on my own and it's been a tough journey leaving my job and trying to adjust to this disability.  But it is amazing how little one needs to survive and how adaptable we can be.   I am praying for you and hope you can increase your meds soon.  Take great care and be gentle to yourself...hoping today's CBC is great news!  

Blessings, Anita

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by beeblessed, Nov 10, 2011
Thanks Anita!  Now if only I can remember that goal, LOL!!  I am praying the best for you.

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by beeblessed, Nov 11, 2011
November UPDATE.....

HGB went down to 8.3, so I had to get a blood transfusion on 11-2-11.  Felt better about 3 days later. HGB came back up to 10.2 (still low).  RIBA has been reduced since October 25th.  Interferon was reduced on Shot #10.  Nurse just called and said to increase Interferon to 135mg.  RIBA to stay reduced until doc has results of next labs, near the end of the month.

As much as I was concerned about the reductions....I have faith, and I am putting my trust in my treatment nurse's expertise.  I am not going to drive myself nuts right now.  Everybody on my doc's team knows the goal is to get me to SVR, the first time (as I have no plans to do this again).  And I really can't "tell" them what to do.  So I am more confident in their confidence in the course of treatment.......for me.  There are a lot of factors they base their decision on, based on my medical issues.  So for now, I am choosing calm over worry, over uncertainty.  I am certain God is watching and is taking care of me.

Oddly, today 11-10-11, this evening I started not feeling so great again.  I am praying this 'feeling' passes, but if not, I will have to let them know.  Seems odd that I would feel bad, in an Anemia way (possibly), so soon after a transfusion.  So I am going to think it is something else and will gage how I feel tomorrow morning.

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by Dee1956, Nov 13, 2011
beeblessed, thinking about you, hoping you are doing ok.  It is amazing to me that you are still working through this
I worked 3 years ago when I was on tx but of course it did not work, mainly cause I had to skip pills or change times so I could force myself to go to work.  I did not miss any pills but was not as strict as I am now, I don't have to worry about losing my job cause I already did but was old enough, lucky enough to retire. That was really bad and my my sugar wasn't being watched and I think that makes a big difference if you don't know you are diabetic
I pray for you and hope you feel better soon
When I could not breath I just laid down.  If you still feel bad, go to the ER
Hugs
Dee

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by beeblessed, Nov 13, 2011
Thanks Dee :)  They are keeping an eye on so many things for me.  I'm tired but otherwise feeling okay this weekend.  Resting up for my 9 to 5 tomorrow, LOL!  The pills don't interfere with my schedule, fortunately.  And since I have added Zofran (as needed) for the afternoon of VIC (makes me nauseous), it makes the day more tolerable.  Thanks for thinking of me.  I'm hanging in there.  Well on my way toward week 12.  Take care!

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by Vannh9, Nov 13, 2011
Bee- I so hope it isn't the anemia. I have been thinking about you since your transfusion. I have felt pretty good...started getting really tired this weekend. I start VIC in a week. You will remain in my prayers sweet lady!

Take care~

Vann

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by HectorSF, Nov 13, 2011
Hi Bee

In boceprevir clinical trials, anemia was managed with RBV dose reduction and/or erythropoietin. Forty-three percent of boceprevir-treated patients received erythropoietin (procrit) to manage anemia. Approximately 3% of patients required blood transfusion.

In the SPRINT-2 trial, the SVR rate in boceprevir-treated patients who did not become anemic was 58%.For patients who became anemic with boceprevir treatment, the SVR rates were in the 70% range. Rates of SVR were 74%, 78%, and 71% for patients who used erythropoietin, reduced RBV, or required both to manage anemia. A similar pattern was seen in the RESPOND-2 trial. Thus, RBV dose reduction did not impair the likelihood of success with boceprevir treatment. It appears that anemia may be a marker of exposure to the PI and RBV.

1. The proper protocol is to reduce ribavirin to 600 mg when hemoglobin is less than <10 g/dl. (* One 200 mg tablet in the morning and two 200 mg tablets in the evening).

2. Discontinue Ribavirin Tablets if: <8.5 g/dL.
Once Ribavirin tablets  have been withheld due to either a laboratory abnormality or clinical manifestation, an attempt may be made to restart Ribavirin tablets at 600 mg daily and further increase the dose to 800 mg daily. However, it is not recommended that Ribavirin tablets be increased to the original assigned dose (1000 mg to 1200 mg).
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You can read the Ribavirin package insert yourself
http://www.drugs.com/pro/ribavirin.html
Look at the section "Dose Modifications"


Cheers!
Hector


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by beeblessed, Nov 13, 2011
Thanks Vann, Thanks Hector!!

Yeah, my RIBA reduction was a big concern for me.  I have discussed it at length with my nurse and doctor.  I do have other medical factors (female stuff) in play and know they are taking everything into account.  Chances are the RIBA will be increased after my next labs, and as the article says -- not back up to a full dose -- but still a bump up.  The Peg was also reduced and has just been increased again (although I messed that up Friday night, dangit).  I am having a tired, sleepy weekend, but I am guessing that is because it has been cold and rainy.  Otherwise, I feel okay right now.

Take care everyone,
Bee =)

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by belle19, Nov 13, 2011
hi bee, just wanted to say hi to you.  read your journal.  sorry about the anemia.  when i got down to 9.7 (i was breathless going up stairs, scary) they lowered my riba dose to 800.  it's been better.  my week 16 hgb was 10.5.  i will know 12/9 what study group i'm in.  could be the end of it for me?  it'd be a great early xmas present.  but i'll do whatever they say to rid this horrible virus for good.  i've been UND since week 8 and i'm starting week 21.  keep me posted on your progress.  i wish you had someone to help you.  thank god i have my husband and my 22 yr. old son, who makes me smile.  he's my treasure.  i'm sending you some positive vibes to boost your spirits.  take care.  belle

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by beeblessed, Nov 14, 2011
Oh no, I am not 'totally' alone.  I have a great family support system I can call on at any hour.  And my nurse has been invaluable, and has the best temperment.  She doesn't make me feel stupid for asking a question or voicing a concern.  But she has also shown me that she is confident in what she is doing, on a case by case basis.  My BFF is a Nurse Practitioner and has been monitoring me also.  After being tired and sleepy (and sleeping) all weekend, right now I am feeling pretty good.

Hoping the best for you in your results.  Sounds like you are doing really well, so try not to worry.

Hugs,
Bee

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by screaming48, Nov 15, 2011
beeblessed hang in there you have done so well so far. I am with you on the low hgb mine is staying around 8.3 I have no energy at all and looks like I have insomnia pretty bad as well.  You are really a fighter and have run the gamut. This will be beat!

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by beeblessed, Dec 23, 2011
DECEMBER UPDATE! ...... It has been a long road since I first posted this.

Anemic at the end of October, RIBA & PEG reductions; Transfusion in November; December RIBA increase; Procrit added; HGB is back up to 11.7.  YAAAYYYY!!  Doing one more shot of Procrit tonight and that should put me back to where I started pre-tx.  Very, very thankful not to be struggling with Anemia right now.  This is week 17 for me.  11 more weeks to go, with a possibility of a bit longer since I had a slight breakthrough at week 12.

Thanks everyone for your encouragement and support.
Bee

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by Vannh9, Dec 23, 2011
Great news Bee! Merry Christmas!

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by Dee1956, Dec 23, 2011
Hi Bee you are an inspiration to me.  I have been struggling to understand why my doc will not authorize Procrit.  I started at 14.8, fell to 10.7 was pretty, now I continue to go down.  The docs office says I am stable however I do not consider going down stable, I believe I am at 9.6 now
I tell them I thought you were going to five me procrit and they just say, if you can't breath lay down, if you feel like you are dying lay down, it is the medication.  Then today they called and wanted to see me because I got a cold sore. Acold sore concerns them but not my lowered RBC, HGB WBC, platelets, medication interactions, medication mixups etc etc. I told them I could not get there.  I am weak and tired and did not think I could make it through the traffic.  I am going to my GP on Tuesday.
Bee I wish you the very best,  I am trying to have a good attitude but some days I feel it slipping, don't mind me, today is shot day.  Maybe I should stay away on shot day
Lots of luck to you, hope you feel better
Dee

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by beeblessed, Dec 24, 2011
Hey Dee.  My doc only gave Procrit as a last rescue.  Reason being, 1st -- it's a drug meant for chemo patients; 2nd -- the FDA has recently had redflags about Procrit.  I've been too scared to read up on that.  My doc only wants me on Procrit to give me a boost up, not to use throughout tx.

Your doc........can't believe the advise for feeling like you are dying, is to lay down.  That's insane.  With your HGB going down to Anemic levels, you have valid reasons for how you are feeling and it is their job to help you and to keep you safe.  Maybe your GP can do something or even refer you to someone else.  All the best to you Dee.  You are an inspiration to me too, so keep kicking Hep C butt and get that Anemia checked.  Maybe a Hematologist can step in.  The stress of not feeling can be waring and depression can take hold, so keep an eye on that too.

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