HGB up to 11!

[jt57]

My doc says I can skip procrit this week, and as long as I keep the HGb between 11 and 12, I don't need to take it at all.

thoughts on this?  why should I not try to get my HGB to where it was when I began tx, which was 14.5?  My ferritin dropped from 2000 to 1400.  is this because of my increase in HGB?


THanks guys!

Jean

[jt57]

stock up on your meds, if you can.  Then change docs.

Jean

[jmjm530]

Yes, I was fortunate. Hopefully you'll get an ANC bounce at your next test.

[Trinity4]

You had a great hepa doc that didn't freak out when you're ANC dropped.  You know about my local guy that I'm trying to maintain with until February.  He just won't go out of the box with my treatment.  I'm in the low 400's now but was at 800 last week. If I hadn't taken my shot early on Friday because I was travelling, he would of made me dose reduce again!  I got a call on my cell phone and the nurse said reduce to 135 mcg. I had a meltdown with the nurse and told her to order the neup now because I wasn't dose reducing again.  I think I have no other choice than to start change docs now and start making the trip to Atlanta.  He wouln't raised an eyebrow at my ANC or would have at least ordered Neup for standby.  I wedged myself into an bad position by thinking I could slide by with this idiot I'm seeing now until Feb.  Gut said change back in October, but Atlanta guy said try to stick it out.  Very frustrating.  
Trin

[jmjm530]

People get lots of infections on treatment but a recent study suggests it's not related to ANC values. My ANC had a similar bounce -- from around 400 to over 1000 in a couple of weeks. Then up and down. Down and up, Etc, Etc,

[jt57]

my whites are low as well, hover around 1.6 to 2.2.  but my anc bounces from 400 to 1300.  right now I am at about 900.  So I guess I am ok there.  I am like you.  getting alot of infections, mono, pneumonia, broncial, yeast (yuk!!), rash is infected...ongoing.  But that really is not as debilitating as my hgb  being in the 7's !!! Now that I am at 11, I feel like a new person!!!


Jean

[Trinity4]

I wish we could trade reds for whites.  My hgb was around 10.5 and is maintaining at 12 - 12.5  now.  My whites are tanking, can keep them up anymore.  ANC is dropping very low and will start Neup soon.  I'd gladly give you some reds for whites.  Isn't tx great!!!
Hope the procrit helps and you stay at an acceptable level.  I've never suffered with anemia except when I took phlebotomy treatments.  Physically, I could tell something was wrong.  Can't tell with the whites, although my legs ache terribly sometimes but don't know if that's associated with low whites.  Very susceptible to respiratory infections and before tx never had a problem.  Compromised immune system.  
Trin

[DB 0]

I was on and off procrit 3 times during TX.Did a half dose of procrit towards the end.Some people react faster than orthers.

[jdwithhcv]

Jim makes a good point.  My doctor stopped my procrit when my hgb came up to 11.2 (it had crashed to about 8 in just 4 weeks) but when I stopped the procrit it tanked again, although more slowly.  I ended up taking procrit for the duration.  The second time I started it took almost 7 weeks for my hgb to rise again.  Ask about less frequent doses, that can help you maintain.  I never got back to 11 until 6 weeks after EOT.

[jmjm530]

Just remember -- and this is the tough part -- you may not feel the effect of your adjustment for 2-3 weeks, so don't jump to conclusions after a week.

As to the ferritin, check out Dr. Dieterich's comments in our expert forum.
http://www.medhelp.org/forums/show/272  I don't think he's concerned with those levels on treatment, but do check it out. May take 30 minutes of so to find the right post but it's there and lots of good reading along the way!

-- Jim

[jt57]

makes sense!  I usually take my procrit on Sunday.  I think I will not take it today, and take it Tuesday instead.  Then see how it goes.

Jean

Any ideas on the ferritin levels dropping with the hgb going up?

[jmjm530]

2nd sentence should read in part -- "...or even START skipping weeks..."

[jmjm530]

I agree with "jd" that your goal is not hgb 14.5. That said, this doesn't mean you should stop your Procrit altogether or even stop skipping weeks unless you are cautions and judiciously monitor things, for example as I suggested above.

[jmjm530]

It's not cut and dry. My pre-treatment hgb was similar to yours. I ended up in the ER with hgb 11.x at week 2 of tx. Later, in tx hgb 11.x would have been fine because my body would have time to adjust. One word of caution. When I went from Procrit 1X week to every other week, my hgb tanked and I ended up having to do 1.5X week to bring it back up. A better plan IMO would be instead of skipping a week to inject the Procrit every 8 or 9 days (instead of 7). Then wait 2-3 weeks, see how you feel and see check your hgb level. If all OK, then inject every 10-11 days. Keep going forward or backward till both the numbers and the way you feel are OK. The reason is because Procrit takes 2-3 weeks both to kick in and leave. If you skip a week and feel OK, you may lull yourself into a false sense of complanceny, then skip a second week and now all of a sudden you're potentially in trouble. You get the idea. And, of course, we're not doctors here so this isn't medical advice, just something that worked for me during tx.

-- Jim

[jdwithhcv]

Procrit can cause deep vein thrombosis.  Your doctor does not want you to throw a clot.  Its too risky to use Procrit trying to get back to 14.5 and your insurance carrier probably would not pay for that anyhow!

[desrt]

Procrit carries its own set of risks - it's another case of 'if a little is good a whole lot is not necessarily better'. Hgb between 11 and 12 sounds reasonable.