Worried re: Journal of the American Medical Association warning

[hsbhandbags]

Hello,
My Dad was diagnosed with MDS last January. I’e been reading a lot on this board and have found the people here to be my best source of information.

My Dad began taking EPO four weeks ago and his RCB counts are up. However, I read a very negative story about the drug today (at http://www.theglobeandmail.com/servlet/story/LAC.20080227.LANEMIA27/TPStory/?query=anemia ). I know this was discussed a lot when the FDA issued a warning last year. Did anyone stop the drug? Are transfusions a possible alternative?

Is this something we should bring up wtih is doctor? (He goes in once a week for blood counts and injections)

Thanks for any guidance you can give me.

[gj]

I find that article interesting and plan on showing it to my onco next week when I see him. I have been on weekly procrit for about six months with only one stop for a transfusion of RBC. Some of the issues with transfusions vs EPO are the length of time it takes for a transfusion and the potential for GVH reaction. There is the necessity to weigh the potenital good vs the bad effects. Also my onco will not give me anything for low WBC because he feels that those drugs could stimulate the MDS and he absolutely refuses to give anything but platelets to replace low platelets, even tho there is a shot that can be given.
Of course you need to bring up your concerns with the doctor. Bring him the article and see what he says and then you can make a decision from there.
Wishing you the best
greg

[jaxem]

greg
I read the article and can understand hs’s thoughts about using esa’s vs hemoglobin txs. in the case, however, of white calls, what do you do to generate whites when you’re on demeths such as vidaza or dacogen that destroy reds, whites & platelets? you can tx reds & platelets but what do you do for neutrophils? my wife’s ANC’s count were down to 0.0 this week which means no infection protection & plenty of GI track issues. can you really send a patient home knowing they are vulnerable to infection? what does your onc say about that?

[marlene]

John went for three months without a white count. During this time he did have issues. He was on multiple anti-biotics, anti-fungals and anti-virals that kept most things in check. Other than putting your wife on prophylactic (sp) dose of these until her WBC is restored (with or without GCS-F) the only other option is to closely monitor her for fevers and get her taken care of asap if an infection sets in. I think there are differing opinions whether or not to use prophylacitc doses or just wait until something comes up. Using GCS-F for no white count versus low white count are separate issues in my opinion. People can do quite well with a low ANC. John did real well for three years with an ANC of .7 -1 without any meds.

BTW….Once John’s ANC got to .3, they started to pull the drugs. He remained on GCS-F though until he could sustain .7 on his own.

Marlene

[gj]

Jack

Marlene really hit the nail on the head re: the WBC and ANC. I took Neupogen during my stem cell transplant but my onco refuse to use it to bring up my WBC because he feels it could stimulate the blasts rather than the WBC. My ANC moves around 0.5 and higher–maybe up into the 2.0 range at the high end. During my first few treatments with Vidaza and Dacogen I spiked fevers and unknown infections and was hospitalized, after that I have been doing everything out patient. With GI issues, I have been on Protonix ever since my transplant and have not really have had issues in that area.

[jaxem]

marlene/greg
each case is different.
I agree living with anc’s above 0.5 is acceptable but we’re talking about sustaining 0 anc’s while being treated with dacogen and valproic acid. infections can bring about irreversible damage to organs such as the heart and lungs. her GI track issues are extremely painful sometimes requiring morphine to remove the edge. my wife is on prophylactic drugs such as an anti-fungal and 2 antibiotics which you hope avoid infections. note that blasts are measured as a ratio of the number of defect cells divided by the number of good cells. hopefully more good cells will be made than bad.

[Neil]

By all means take it up with his doc.
I spoke to my radiation oncologist about it today.
EPO is a growth factor. It is intended to grow red cells. Apparently there is a possibility it can grow cells it was not intended to have any effect on.
My R/O indicated his info was that it involved chemo patients being treated for leukemia and lymphoma. He did not have any info of it impacting other forms of cancer.
Also plan to discuss it with my hemo onc. next week

[marlene]

Jack,

John too was on GCS-F when his ANC was zero. It’s not until he could manufacture enough on his own did they pull it. I agree you need manage each case individually…that’s the “art” of medicine and a sign of good doctor who can look beyond studies and standard drug reccommendations/dosages to tailor a treatment for the person.

I hope your wife can get a handle on the GI issues and that her white count kicks in soon. John’s GI track remained strong, it was his heart, lungs and bladder that took the hit during that time. So I do understand the concern around infections only too well. Would liked to have avoided that “life experience” .

Marlene

[jaxem]

marlene
my contention centers on the use of growth factor, neupogen/neulasta. my thinking again is never to let a patient with blasts get below 0.5 anc while being treated. yes, blast cells will increase, but so will the good whites. I’m assuming the growth factor will linearly increase both good & bad but the blast %age will remain the same. now the treatment drug will act to destroy the bad cells which in turn will reduce the blast %age.

again, waiting for something to come up is just downright dangerous. how many times are antibiotics given that don’t work and you have to return to get another. sending a compromised blood patient home knowingly below minimal limits (& every clinic knows what these are)is wrong.

[marlene]

Hi Jack,

We never had to deal with blast since John had SAA. But there really was no choice but to wait for his counts to come up. Without sufficient stem cells in the bone marrow, there’s nothing for the growth factors to work on. So until the stem cell population started to recover, the GCS-F had no effect. SAA is a waiting game. You get treatment over 4 days and then wait and see what happens.

John’s treatment at Hopkins is designed for the majority of it to be done as an outpatient. The initial chemo is done in the hospital and then you are sent home. They fully expect, and want, your counts to zero out….all three lines. And unless you spike a fever, you continue your supportive therapy as an outpatient. If you do spike a fever, then you get treated as an inpatient until you go 48 hours without a fever. They will not discharge you until the fever is under control. We met a lady who did her entire mini transplant as an outpatient. Not once did she need to be admitted.

Marlene

[jga_socal]

What I think I know about this subject…

Regarding the stimulation of cancer cell report, the article doesnt identify what types of cancers are stimulated by EPO, except that EPO may “cause tumors to progress”. MDS does not cause tumors so perhaps this study is not applicable to us? In addition, even though MDS is a ‘clonal disease’ like cancer, many/most doctors do not categorize MDS as cancer.
Regarding the other potential problem with EPO, blood clots, this should not apply to us because we tend to be very anemic. The blood clots tend to be a problem for people who have a relatively minor case of anemia. For people who’s hemoglobin is less than 10, I dont think blod clots are an issue with EPO treatments.
As a result of the blood clot warning last year I believe the threshold Hgb required for EPO treatment was lowered to 11 or 10. So, people who are slightly anemic at 12, even though they claim to be miserable because of it, should not get EPO until their Hgb drops below the threshold.
Jim

[jaxem]

jim
good point about mds & tumor growth; hadn’t thought of that. mds as a cancer is argumentative. most experts believe that it is but it is debatable. I’m not sure what most docs believe but “experts believe that it is” comes from Mayo. when it is said that aml is a cancer but mds isn’t never made sense to me. think of it; defective cells originating from stem cells sure sounds like cancer to me. and that’s what happens in mds. leukemia is a cancer but mds isn’t aml until blasts reach 20%. talk about confusing people.

[1Chris]

Jim,

Blood clots are an issue with MDS patients if they also have thrombocytosis (too many platelets). I was taken off the Epo for that reason.

Chris

Christine Thomas – 76 yo, Dx 11/96 MDS/RARS – Trisomy 8, Transfusion dependent since 2001. Monthly Desferal infusions with tx for iron overload.

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