HGB still dropping

[Maui lover]

Husband was started on 40,000IU of Procrit weekly beginning in September.  HGB at that point had dropped to 7.4.  He was also taken off of Riba for three weeks.  HGB climbed back up to 11.6 and he was put back on 1000mg of Riba.  His HGB continued to drop by about 1/2 pt per week.  Another 40,000IU of Procrit per week was added a couple of weeks ago and Riba was decreased to 800mg.  HGB still dropping; yesterday's labs show it's now at 7.6.  Any thoughts/experience on what to do next?  He did shot 17/24 last night.  I'm thinking he should reduce Riba to 600mg starting today and talk to the doc on Monday.  He's so close to the end of tx, but it just seems to be getting harder every day.  He is sick and tired and ready to give up on the whole thing.

[sfbaygirl]

What about a transfusion? I know Mister Beagle Baily had this problem and instead of dropping the riba too much and be able to continue tx, he had a few transfusions. He is so close! Are you going to a hemotologist?

[sfbaygirl]

I think I mentioned last week about Aranesp? This is a longer acting Procrit. This is what I took and my Hgb finally leveled out. It has started dropping again, but a little at a time. At this point I am trying to avoid the drugs. Dropping a little Riba at this late stage is not the end of the world, but I would avoid it if possible. I have heard people doing the procrit every 5 days instead of 7, and doing much more Procrit than 40,000 aweek. I think someone was doing 100,000 a week. So he is doing 2x week now? Maybe moving it up a day or so would help. The drug does take time to work, so it may take time for it to go up again. Hopefully it does that and not go down.

[Maui lover]

He is doing 40,000 twice a week - Monday and Thursday.  Prior to 11/27 he was doing 40,000 once a week.  Recent labs are as follows:
hgb 9.0 11/17
hgb 9.0 11/24
hgb 8.0 12/01
hgb 7.6 12/08

So his hgb has gone DOWN since the Procrit was increased.  Maybe it has stopped working for him.  That would suck because then the only solution would be further reduction in Riba or stopping altogether.  

Jordie, I hope your numbers start going up.  This is just miserable all the way around, isn't it?  I'm trying to stay postitive, but it's hard!

[Maui lover]

The last time it dropped this low his doc was not ready to transfuse.  He said if it dropped into the 6's they would probably do it then.  He is not seeing a hemotologist at this point.  Probably wouldn't be a bad idea, huh?  

Something I've wondered about but never got an answer was if you add another shot of Procrit to the mix does it still take
2-4 weeks to start working?  His hgb leveled off at 9.0 for almost three weeks.  Last week was when it dropped to 8.0 and now 7.6 this week.  Could it be that the Procrit has stopped working?  

Rev, we will definitely be calling the doc on Monday.  Thanks for your comments, I appreciate it.

[jordie47]

I seem to be having a similar problem. I am on Aranesp a rescue drug like procrit. I had been doing fine on the dosage I was at, HGB was at least staying around 10. Yesterday when I went for check up HGB had dropped to 9.4, so I had to increase Aranesp dosage but, I was told yesterday by my hemotologist your body can stop reacting to the rescue drug. I am trying to stay on the full dose of riba 5 also but have been told if this dosage of Aranesp doesn't work they will cut riba down.
Tracey

[sfbaygirl]

It does take 2+ weeks to go up and when you are that low I have heard it can take up to 5 weeks. Hang in there, keep getting those labs and see the dr. soon! Once they begin to go up, you will see it. He must feel awful! Let us know what the dr. says Monday.

[l-horn]

I agree with SFbaygirl. My mother had this problem doing chemo and procrit wasn't doing the job. They gave her blood transfusions every now and then and it worked like a champ. It's cheaper than procrit as well. About $800.

[Maui lover]

So even though he was on 40,000 weekly it still will take 2-4 weeks for the other 40,000 to start working?  I guess that's where my confusion lies.  I assumed that since it was already in his system the added dosage would kick in right away.  Never assume anything with this disease, right??!!

[Sally01]

Sorry he is not feeling well.  I have had the drop in hemoblobin due to riba.  Mine went to 6 and I had to have 3 units of rbc's.  I also had to take a 2 week break from the riba.  I felt SO MUCH better after the transfusion.  There are risks related to receiving blood however.  Low hemoglobin carries its own though as it is hard on the heart.  Things your doctor is probably weighing  when deciding at what point he would give blood. Please contact your doctor soon would be my advise. You are at a crossroad that many of us have been. I know he doesn't want to give up treatment too soon and yet when your blood count is so low and you feel lousy, just kind of want to give up.  Try to hang in there.  You are being very supportive and right now I think he needs it.

[MissMiss]

The last two months of my tx I dropped into the 7's.  My procrit was raised to 120,000 a week.  My hemo didn't think it would do much but I somehow made it to the end without any blood.  I think I ended somewhere in the high 8's, can't remember off hand.  Dropped one Riba the last week to 10 days.

Your husband has got to be feeling just awful!  Don't let him do much to excert himself.  He could easily pass out and his muscles and organs are starved for oxygen.  

My hemo also did a blood test to see if my own body was fighting me.  I wish I could remember the test.  Some of us are just more susceptable to the hgb drop for some reason.  It may have been called a RETIC and RETIC Absolute.  

If there is another reason for the drop in HGB, although this is unlikely, it may help in dealing with it.  

My heart goes out to you and your husband.  Bless you for taking such awesome care.  You are his hero!

miss

[Maui lover]

Thanks guys, your time and words are much appreciated.  He is really my hero right now.  He hasn't missed a day of work since beginning tx and he continues to do as much as he can around the house.  He takes the weekends to recover from his shot and the week in general.  I know he isn't feeling well because he is actually going to take a week off of work at the end of the month, something that he almost never does unless it's for a vacation.  I'll keep you guys posted next week.