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Old 02-27-2007, 02:34 PM   #1
Grace
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Caution concerning erythropoietin, or Epo

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.
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Old 02-27-2007, 05:06 PM   #2
Lolly
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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/he...ss&oref=slogin
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Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.

Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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Old 02-27-2007, 07:21 PM   #3
Mary Jo
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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
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"Be still and know that I am God." Psalm 46:10

Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

17 Years NED

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Old 02-27-2007, 11:38 PM   #4
StephN
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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.
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 02-28-2007, 11:00 AM   #5
Grace
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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!
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Old 02-28-2007, 11:29 AM   #6
Becky
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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.
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Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 02-28-2007, 11:40 AM   #7
Grace
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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!
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Old 02-28-2007, 12:09 PM   #8
AlaskaAngel
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Question

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
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Old 02-28-2007, 01:40 PM   #9
RhondaH
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Exclamation SO glad I didn't opt for the blood transfusion OR

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
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Rhonda

Dx 2/1/05, Stage 1, 0 nodes, Grade 3, ER/PR-, HER2+ (3.16 Fish)
2/7/05, Partial Mastectomy
5/18/05 Finished 6 rounds of dose dense TEC (Taxotere, Epirubicin and Cytoxan)
8/1/05 Finished 33 rads
8/18/05 Started Herceptin, every 3 weeks for a year (last one 8/10/06)

2/1/13...8 year Cancerversary and I am "perfect" (at least where cancer is concerned;)


" And in the end, it's not the years in your life that count. It's the life in your years."- Abraham Lincoln
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Old 03-01-2007, 06:50 PM   #10
Lolly
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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
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Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.

Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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Old 05-21-2007, 02:25 PM   #11
AlaskaAngel
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Update on red blood cell drug

http://www.oncolink.upenn.edu/resour...&ss=222&id=937

Erythropoiesis Stimulating Agents: Where Are We Now?

-Abramson Cancer Center of the University of Pennsylvania
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