When EPOs Stop Working

[Joan]

Some of you have written that Procrit or Aranesp stopped working after varying lengths of time. How did the dr. determine the EPO wasn't working any more? Don has been on or the other for over 3 years now and although his HGB has dropped over that length of time, it some times goes up a few tenths and then goes back down. He hasn't needed a transfusion since July, 2007, when he was hospitalized for drug reaction to Exjade. His HGB generally runs between 9 and 10. Thanks.

[Dick S]

Joan, for my own personal information, when your husband Don's HGB is in the 9 to 10 range is he awfully tired and fatigued a lot? Excuse the rather dumb question, but I need to know. I have the same diagnosis as Don's since 2006.

[Birgitta-A]

Hi Joan,
If the patient has anemia symptoms like your husband the doctor could give him Neupogen or a similar drug together with EPO since that combination could increase his HGB. One patient in one study responded 116 months .
http://www.ncbi.nlm.nih.gov/pubmed/18559873
Kind regards
Birgitta-A

[Joan]

Dick;

Yes, he is tired but it is amazing how he keeps going. Yesterday his HGB tested at 9.2. Today he took a 2 1/2 mile walk, went back and forth to the garden 4 times which is about 2 blocks each way, helped in the kitchen plus some other piddling tasks and still hasn't had a nap. I don't know how he does it. Admittedly some days he sits and reads and snoozes in the chair most of the day.

[helen c.]

hi this is helen wife of william, yesterday we got the results from his dr. about lates bmb. he is now considered high risk with blasts at 8 to 10% and chrmosone 3 abnormalty. the local dr. wants him to go in hospital now for high dose chemo she suggested 2 different ones ( dont remember what they were) i am also waiting on a second opinion from moffitt cancer center in tampa our children would like for him to be treated there. we went there fri. and based on his bmb in jan.09 they suggested a clinical trial. but his cancer dr. in lakeland yesterday based on his bmb that was dont last tuesday said he is too advanced for that trial. i just want his to get the best reatment that will give us a hope for a better quality of life for him thank all of you for your support

[Dick S]

Helen if it were I, and it is not, I would insist on seeing Dr. Alan List at Moffitt. From my research, he is the preeminant MDS doctor there. He is also one of the doctors that did the research&development of Revlimid as I understand. I am sure there are other very good doctors there as well.
I currently go to the West Palm Beach VA Hospital, but if the going gets real rough and I don't think they are handling the situation right, I'm heading for Moffitt.

[Lisa V]

Joan,

I had the same questions about EPO when my husband was on Procrit. Obviously if your husband's Hgb were to drop to the point of needing transfusions, it would be an indication that it had stopped working. Apart from that, it can be difficult to tell. Even our doctor couldn't provide us with a satisfactory answer as to whether it was really doing Ken any good or if he was just responding to ATG. Since our insurance didn't cover the cost of the shots, I very much wanted to find out if it was really worth it, so we tried skipping the injections for a few weeks. We got our answer right away when his Hgb dropped significantly (not the little normal fluctuations that we had been seeing up to that point).

I too was concerned that it might stop working, based on some of the comments here. Also that it might make his kidneys less inclined to do the work themselves, or that the use of growth factors could increase his chances of transformation or developing some type of cancer. I expressed this to his doctor, who told us he had a patient who'd been on EPO for 10 years with no problems, so he didn't think it was a major concern as long as he wasn't showing any indication of difficulties. Fortunately for us, Ken was able to reduce his dose and then discontinue it altogether once his Hgb started to hold its own, but he was on it for close to 4 years with no problems. I realize this is a different situation than yours since Ken was gradually responding to the ATG, but I do think it's possible to remain on EPO for longer periods of time without issues than what I've heard some people claim.

Hope this helps,

[Joan]

Lisa;

Thanks. Don said dr. told him he had had patients on EPO for years with no problem. I didn't hear that conversation. Don is getting his shots covered by Medicare and his supplemental insurance so at this point payment isn't an issue. Glad your husband is doing well.

Joan