[patti]

Aleksandra,

I am so sorry. It’s been a long haul for you and your mom. Take this time to rest, grieve and prepare for your new baby.

God bless,

patti

[patti]

If the procrit shots aren’t working you should stop them asap. The general thought is if they aren’t working to increase red cells they are likely increasing leukemic or blasts cells. If procrit is working, B12 shots can be given with the procrit without any adverse reaction. There’s an article posted a few days back on a thread called “anemia.” It would be good for you to read it because it covers potential issues with procrit and aranesp (issues that mom’s NP and us figured out 2yrs ago).

HTH

patti

[patti]

Aleksandra,

Oh, I am so sorry. Praying your mom can beat this flu. Just do your best to support her with fluids, rest, zinc if she can keep it down. Hang in there.

patti

[patti]

[QUOTE]Originally posted by Carl:
[QB]

The drugs, sold by Amgen, Roche and Johnson & Johnson, are used to treat anemia caused by chemotherapy and meant to reduce the need for blood transfusions and give patients more energy.
[Q]

Neil,

You are correct. They are stating that these drugs are used to treat anemia caused by chemo. It was trials that were done that showed the risk of increasing cancers was done in people whose cancer’s themselves caused anemia (ie. MDS, leukemia).

Those are two different things. One is the drug company stating what the drugs are currently used for (ie, anemia caused by chemo – off label) and the second is the result of trials done on patients whose anemia is caused by cancer (not chemo). The information coming out now is the result of new drug trials (to change labeling info) on patients with cancers that CAUSE anemia.

That doesn’t change any of the what you said regarding QOL issues, etc. It’s just important, I think, to distinguish between those two statements in the article because they are two very different things.

Again, I think that if faced with choosing procrit/aranesp or transfusion dependency, most folks would choose the first over the latter. Not saying that’s a bad thing. I think it’s just instructive that it could in fact increase the disease itself – which is what we think occurred with my MIL. But we thought that long before this article ever came out.

I’m not saying one approach is better then the other. Just that this information coming out will certainly give folks more to have to consider when trying to decide the best course of treatment for themselves.

Patti

[patti]

Neil,

I read that differently then you did. It says that the anemia is caused by the cancer itself, NOT chemotherapy. What that says to me is that cancers like MDS (to be technical it’s like a blood cancer) or leukemia caused anemias fall into this category. Not arguing, just wanted to clarify.

Also, you make very good points about quality of life issues. I think that’s what makes the decision all the more difficult. Does one take transfusion dependency (and probably a very diminished QOL as a result) or use the EPO’s and be free to transfusions? To me it seems like an easy decision as long as one understands the risks of increasing their disease as a result. It really sucks having to choose between “which one will kill me first? Transfusions or EPO?”

Glad to hear you’ve had good QOL. Mom has too until just recently and we are very thankful for that.

patti

[patti]

Bee,

How old is your mom? I’m only going to give you my personal opinion. You can most certainly toss it out. If your mom is already weak, I would not recommend she start decitabine. While it does help some people, getting to the point that it helps is at times difficult and risky. Her counts will drop during that time. The question is, can she survive that drop in counts even with supportive care? While my MIL never intended to do chemo in the first place, we did discuss the options with her doctor. And even recently her current doctor stated she would never recommend any of the chemos for my MIL because she feels like the chemo alone would kill her (even though it’s “light” chemo) faster then the disease itself will kill her. I think that is something you seriously need to consider with your mom. If her doctor is pushing her someone really needs to step in and be an advocate for her. My MIL is 76 and has the same diagnosis as your mom. Your mom might be young enough that they think she can handle it but your assessment that she is very weak is something that should be considered very seriously.

HTH

patti

[patti]

[QUOTE]Originally posted by Carl:
[QB]
The trial was testing the drug in patients whose anemia was caused by the cancer itself, not by chemotherapy.

“I think there’s enough biologic plausibility to the argument that they can serve as a growth factor for the cancer cell,” [QB]

These are two very important statements. MDS would fall into this class of anemia caused by cancer itself.

Mom and I talked to her nurse practioner about this several years ago. At that time neither procrit nor aranesp were working (she was on them for 9 months) and we both said we felt it was only progressing mom’s disease because if it wasn’t spurring out red cells it was probably growing leukemic cells. While the NP agreed with us and we stopped it the doctor did not agree that would be happening. Even if it had worked for mom, it is a growth factor and logic says it will cause the good and the bad to grow (especially in blood cancers).

The bummer is, while these didn’t work for mom, they do work for a lot of people. So what’s someone to choose, their disease getting worse faster, death by short order, or transfusion dependency for who knows how many years? Not a very pretty option we have, huh?

Culpability on the part of the drug company? Sure looks like it to me.

Patti

[patti]

Thanks, Pam. Mom has RAEB so her marrow is basically in complete failure. I’m guessing she’s just unable to get those stems cells to mature with the neupogen anymore. Thanks for sharing. How cool that your body kicked in!

Patti

[patti]

KWJ (it feels weird to write that!),

I’m so sorry. This was such a fight to get something to work for your dad. I’m sorry you’re going through this. It doesn’t matter how much we think we prepare ourselves for losing a parent, it just doesn’t compare with what it feels like to actually lose them.

Thinking of you during this time….

patti

[patti]

You’re actually both right. Neupogen *is* supposed to work fast – but what we’ve found by testing things out is that it doesn’t always.

I don’t think there is any real scientific reason it happens, it seems it just depends on the person’s body. Maybe it has something to do with how well (or how not well) there bone marrrow is functioning. Maybe sometimes it just takes longer for those stem cells to mature and kick out the cells. If that were the case, it would make sense for my MIL’s case because her bone marrow is nearly completely non-functioning. Don’t know.

HTH

patti

[patti]

Jim,

I think age is a real factor with ferritin levels and the damage it causes. From what I’ve read and working with mom’s doctor, the real young and the elderly tend to suffer damage much faster from the iron overload. My MIL is 76 and has experienced quite a bit of liver and kidney damage from the iron even when her levels were “only” 1500. She is now at 3500. We stopped the Exjade and have decided the let the iron overload go for now because there are other more pressing issues and she is clearly at the end of this disease. That said, when she was taking the Exjade it worked very well and very quickly at very low doses. She never took more then 500mg a day and even being transfused every two weeks was still dropping 250 a month. It is extremely expensive. She has a decent medicare plan that cover most of the cost. The Exjade did drop her white cell count (she couldn’t afford to lose even one) so you would want to watch for that if you take it.

Are you juicing at all? If not, you might consider juicing greens and beets at least once a day (but two or three times is better). Juicing is excellent for holding those counts up. Especially the beets for reds.

To juice greens you can simply juice romaine lettuce, any green lettuces (except iceberg!), throw in a carrot and an apple. Juice and drink right away. Always use organic if you can.

For beets: Juice one organic beet, organic lemon, one organic cucumber. Mix with 1 tbls olive oil. Drink right away.

Doing both of these things will help your counts improve.

Patti

[patti]

Our experience with neupogen is that it doesn’t actually work for at least a week. Hence, a shot taken on Monday one week won’t begin working until the following Monday (or thereabouts). We only discovered this when mom went to get her picc line put in. She gave herself shots 7 days in a row but those shots didn’t actually produce large quantities of white cells until a full 7 days AFTER the last shot. So it was 14 days from the first shot. The radiologist that did the picc said this would happen. The oncologist said mom would have white cells immediately. Later the doctor admitted that the radiologist was correct. So, guess the radiologist knew a little more about this one…..We don’t see that doctor anymore (not for that reason, but it didn’t bode well for the doctor as far as we were concerned). We’ve found the reverse to be true also. Since mom gives herself shots 2x’s a week, we noticed that if she misses a week she still has white cells the following week due to the shots the week before. Her counts don’t actually drop until a week later.

Not sure if this is “supposed” to happen, but it’s what happens to my MIL.

As for the blasts, it’s possible his blast count has increased due to the disease itself and Sloan won’t do a transplant? That doesn’t make much sense since they do chemo/radiation in prep for a transplant, but it’s a possibility.

patti

[patti]

Zoe,

Contact the drug company directly. They frequently have programs to help defray the out of pocket costs of drugs. Also, you can check out http://www.healthwellfoundation.org to see if this would fall under anything they have funds available for right now.

patti

[patti]

hee hee. We need a good laugh around here once in awhile!

So right now, Zarnestra is still in clinical trials? Or is it approved for AML? Thanks.

patti

[patti]

hee hee hee. You started my morning off laughing. Thanks.

Hey, looking at your stats, they look good! The Zarnestra is agreeing with you. Do you know if they are only looking at this for only CMML or are they considering for MDS as well?

take care,

patti

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