HERCEPTIN and Aranesp Red Blood Booster

[Andrea Barnett Budin]

Hi y'all! Missed you for awhile. Glad to report that I'm still here, though! Diagnosed 4th stage in '95 at age 50. Metastasized into liver in '98 -- multiple tumors. Taxotere (Sept. '98 thru May '99) adding Herceptin every wk in Nov. '98. Went to every 3 wks Herceptin in '02. Sticking w/the plan! NED (no evidence of disease). CTs (chest/abd/pelv), ECHOs, pelv. sonos, etc.

Major fatigue. Drippy nose. Dry eyes. Poor nails. (Had turned black and lifted off the nailbeds w/oozy stuff peeking out, but just frail little girl nails now.)

Worst of all -- red blood cell count keeps dipping! AM I THE ONLY ONE? They used to give me Procrit. Now Aranesp. A $7,000 injection. Does the trick. Peps me up. Makes me feel perky. My red blood cell #s go up. Then slowly creep back down. NOW big hullaballoo over possible dangers, giving this if your over 12. Okay. BUT -- Medicare (which I am not yet on) won't approve NON CHEMOTHERAPY PATIENTS for this treatment any more. Insurance cos. following suit! HECEPTIN is, after all, a monoclonal antibody. So am I to wait until I'm crawling and in need of a blood transfusion, or go into renal failure, to get some attention?

IS ANYONE ELSE HAVING THIS ISSUE? What to do...? Throughout it all I have remained absolutely positive. I meditate. I pray. I read up. I keep in touch w/all you wonderful women. I inspire others. Now, I'm feeling like I'm falling through the cracks and in desperate straits.

The social worker today, at the chemo center, is usually wonderful. I told her I'm tired. Well, we're all tired. I find getting dressed an effort. I need to lie down afterwards. Can hardly move. Well, I'm not that tired! Hello? Great, I'm not a "chemo" patient, but Herceptin means I'm still out here in uncharted waters. CAN ANYONE ADVISE ME RE THIS MESS?

Hi Andrea,

Sorry to hear you're so tired. It it perhaps the herceptin that's doing it. I am also very tired, no energy to do anything but sit and it always gets worse the first few days after herceptin infusion.

Also, are you sayng that your hemoglobin is above "12" and you still need a booster. I wasn't sure as you mention that medicare won't approve a booster if you're "12."

Wish I could help but beyond herceptin as the cause I have no answers. I think it's great that you're NED though, and I hope that continues for a very long time to come.

[Chelee]

Andrea, I did 6 cycles of TCH and ran into many side affects you did with the finger nails falling off and being tired, etc. I did get procrit and felt so much better after each injection of it.

But I noticed after I was done with my chemo and JUST on herceptin they would NOT let me have the procrit anymore. Even with my counts a little low from the after affects of chemo they still said in time my counts would go back up and to just be patient. I tried like you did to explain HOW tired I was and really wanted the procrit. Was told no each time. They said there are many side affects to procrit like any other drugs and its better I not have it. So I just had to deal with it. I felt like you did so I can completely understand how you feel. I don't know if it helps...but about 4 or 5 months after chemo and just on herceptin...my counts got back to being completely normal and I felt pretty good again. I really feel for you though....hang in there.

Chelee

[tousled1]

Andrea,

I've had problems with my blood counts since initially starting chemo. I've been on Herceptin only for the last year and my red blood cell count continues to drop. I've been getting Procrit shots. I had my last Herceptin infusion today and my red count was down (10.7) so I got what will hopefully be my last shot of Procrit. I am on medicare since March 1st (also have secondary health insurance) and today I had to wait quite a while until they got approval to give me the shot.

[Joe]

Dear Chelee, Thank you so much for your response. Just making contact with someone who gets it feels wonderful. I was diagnosed in '95 (with 4th stage invasive lobular carcinoma and 2 lymph nodes involved). Had mastectomy, 4 Adrymiacin and 8 CMF. In '98 it metastasized in my liver (multiple sites). Taxotere from Sept. '98 thru May '99. Herceptin from Nov. '98 -- to today. THE RED BLOOD CELL COUNT DIPPING HAS NOT CHANGED. A 300 mg shot of Aranesp keeps my head above water for about 3 mnths, then I begin dipping again. My doc calls it chem-induced anemia. I know I'm not on chemo -- am on a monoclonal antibody -- but that is what he writes in my chart. Still, Medicare, and most insurance cos, have decided not to cover the $7,000 injection for NON-CHEMO patients. I do remember when the outrageous cost was $1,000-$1,200 for the injection. Aranesp is cheaper than Procrit and, as it is, the former lasts longer -- FOR ME!

I am going to call my doc (who was away last Thurs when I came in for Herceptin, as I do every 3 wks, for my triple dosage). I want to know if he will fight for me. He has many patients just like me -- on Herceptin only. I want to know if it's just me that has this plummeting of red blood cell counts.

I think it is GREAT that your boby came back to itself, and in months, rectified the problem! Good for you! I really mean that. Your immune system is doing it's job, and that's the best of news. They have run every kind of blood test on me, trying to figure out a reason for my unsteady hemoglobin counts. They can find nothing! And all I know is that summoning the strength to get up and get dressed wipes me out. EXCEPT when I get the injection -- and I'm "perky". Soon I fall back into the valley, but while I'm "normal", I feel like I'm skipping along. Glowing.

I am grateful with each an every day for beating the odds and being here altogether. Here to greet 5 grandchildren! I feel lucky. I feel truly blessed. I say THANK YOU every single day. And I monitor my every thought to keep worries and fears to a minimum. I don't repress them. I experience them and toss them like a live grenade. I know that WHAT I THINK ALL DAY WILL DETERMINE MY FATE -- so I live full of love, joy and harmony. But, this new kink is annoying the heck out of me. I feel forgotten. With no voice to speak for those who are NON-CHEMO patients. I am a Survivor and a Warrior, but somehow got separated from the pack!
Thank you sooooooooo much for your support and your caring. Please keep in touch.

ANDREA