Caution concerning erythropoietin, or Epo

[Grace]

In the business section of the New York Times today there is an article concerning the use of the various versions of erythropoietin (epo) drugs (procrit, eprex, neorecormon, epogin, cera, etc.) to treat anemia caused by chemotherapy. Some experts (and various trials) are suggesting that epo drugs may serve as a growth factor for tumors (head and neck, in particular). In addition, there is a concern that the drugs may create a higher risk of heart problems. "The Food and Drug Administration is planning to convene an advisory committee meeting to review the products, Dr. Richard Pazdur, the agency's director for cancer drugs, said in an email message last week alerting cancer doctors to the new findings."

I am not trying to scare anyone, or play doctor, but I thought I should share this with those of you who are very proactive regarding your treatments. You can read the article yourselves by going to the New York Times website. The article is in the business section.

[Lolly]

Here's a link to the article Grace is referring to:

Studies Show Anemia Drugs May Harm Cancer Patients
http://www.nytimes.com/2007/02/27/health/27drug.html?_r=1&ref=business&oref=slogin

[Mary Jo]

Hi,

For those of you who went on something because you became anemic I hope that isn't true. Geez! I never became anemic on chemo so didn't need anything. However, I did read on this board somewhere, that Neulasta can also cause some troubles or so "they" say. I did receive a Neulasta shot the day after chemo. It surely did help me. Never once had low counts on any of what they look it in our blood.

Oh well, just like the food we eat........if it's not one thing it's another. Just have to let it go and not worry about what we really have no control over. Sorry, don't mean to sound negative. That isn't my intention but sometimes it gets so sickening hearing on the news, reading in the papers etc. don't do this, don't do that. Ya know? Oh well.........just throwing in my 2 cents worth - for what it's worth (smile)

Hugs to all,

Mary Jo

[StephN]

I became VERY anemic on my hard chemos two years running.
Without taking Epo the first time and then being one of the first in my area to get the new long-lasting version called Darbypoetin (sp?), I would NOT have made it through my treatments.
As it was (with the blood boosters), I had to miss a couple of times or have my chemo dose cut.

These drugs were considered to be a very integral part of my treatment, and helped keep me on the chemos. There were risks mentioned in my trial papers, but these were secondary to trying to fight and stay alive. So far there were none of those scary things in my case because of taking the Neupogen, which I gave the shot to myself for months and months.

Sometimes we need to put the priorities in order. There are risks with every treatment.

[Grace]

I agree with you, StephN, and am delighted to hear that Epo made the difference for you.

I gave considerable thought to the issue of treatments that help in some respect and cause harm in others (herceptin, of course, is a prime example) before posting this information on Epo. I decided to post it as the more information I have about my treatments the more in control I feel (and I believe there are others on this board who may feel the same). I hate giving over control of my body to doctors and have refused to do so since learning I had breast cancer. I am still disturbed that my oncologist, after my last muga scan, did not share with me the information that I may have some issues with the right ventricle, even though the EF of the left is fine. He wanted me to stay on herceptin for the full year so felt it better not to share this information, but that, after all, was my decision to make, not his. After learning of the muga finding (through no fault of my doctor), I visited a cardiologist who suggested I stick with herceptin for now but get my next muga in two months rather than the standard three and review the findings again. I did stick with herceptin, for now, but it was my decision, not my doctor's.

I do a great deal of reading concerning HER2 breast cancer and its various treatments (even with that I just happened to sumble across this information in the business section). I would welcome the views of others if perhaps in the future I should keep this type of information to myself. I will have no problem, or hurt feelings, whatever you decide. Really!

[Becky]

Dear Grace


Don't keep the information to yourself! The value of the almost 1500 of us on the board is to learn, discuss, debate and support one another. Information is power and that empowerment allows us to help ourselves (in terms of treatment options, relationship with doctors etc) and to help others.

I agree with StephN and you on the use of RBC boosters - if you need them, you need to use them. Knowledge that they could be a problem is good just so no one uses them "willy nilly". Everything is interconnected in our bodies because we are living organisms so I think we are all pretty sure that impacting one thing could impact something else. Even taking an aspirin to get rid of a headache can make a certain individual's stomach bleed (I think you get what I mean).

I am sure I speak for many of us that we appreciate everyone's imput on this board regardless of what is being posted. All of us have dealt with the good news/bad news of this nasty disease and together we can help each other keep it at bay until a permanent cure is found.

[Grace]

Thanks Becky. Your aspirin analogy works for me. My husband took a NASID for knee inflamation and had severe bleeding. Since colon cancer runs in his family, we were in a panic that perhaps this was his problem. Fortunately not, but he's very careful these days whenever he takes any type of anti-inflamatory drug, aspirin included.

My oncologist spoke of putting me on an Epo drug while my counts were still in normal range (willy nilly), although certainly lower than they were before I began chemo. I refused and am glad I did, as my counts are almost back to previous numbers. I re-introduced myself to liverwurst, which I hadn't eaten since childhood. Not sure if it helped, but it certainly brought me back to the golden days!

[AlaskaAngel]

Originally the question about these drugs was raised by Tom quite some time ago in the articles forum. Since then further questions have arisen in the scientific community, and in that light I have been continually posting scientific articles on the Articles Forum following this issue.

A major plus about this website is the focus on pooling quality information for consideration. Although articles that tend to challenge general practice can be uncomfortable reading for people in treatment, we would be slower to learn from mistakes if we don't try to consider questions that are being raised.

Posting articles documenting the basis for concern or as the basis for refuting the concerns that are raised is probably the best guideline for sensitive information.

Those who read the Articles Forum routinely are aware that the question about these drugs has been posted there along with continuing concerns about them raised by various parts of the scientific community.

AlaskaAngel

[RhondaH]

the procrit. After my last chemo my reds bottomed out at 8.1 when I was hospitalized. They wanted a transfusion, but I didnt't and they said that if it goes below 8.0 I would have no choice. When I was released from the hospital, my onc nurse was going to give me procrit, but after testing me found that my counts were back up to 12 (I SHOVED as much liver as I could muster) and she said there was no longer the need for it.

Rhonda

[Lolly]

I took Aranesp injections during my last regimen with Navelbine; it was that or transfusions. But, it was presented by my onc and nurses as a choice of treatment for the anemia or skipping doses of chemo until blood counts recovered. I chose treatment over allowing the cancer to get the upper hand, and Arenesp over transfusions as being safer. We each must stay as informed of our choices as is reasonably possible, but also realize that medicine trumps disease in most cases.

<3 Lolly

[AlaskaAngel]

http://www.oncolink.upenn.edu/resources/article.cfm?c=3&s=38&ss=222&id=937

Erythropoiesis Stimulating Agents: Where Are We Now?

-Abramson Cancer Center of the University of Pennsylvania