Debbie,

What day post chemo is Jo at? Is she being platelets and red blood. Asyou know iI had very slow platelet recovery but never needed platelets after day 30 and red blood after day 36. I hate to bring up bmb knowing how painful that is fir Jo, but that may be the next step. How is her ANC

Praying
Julie

Hi,
My levels have fluctuated alot this round (3). I'm on day 37 and the doc keeps pushing back the next round of chemo. My WBC and ANC went up a little and now they are back down to WBC .9 and ANC .06. My Hemo is 8.9 which is down from Friday. My platelets are up a little (57). So no transfusions needed, but I feel Jo's frustration. Things are supposed to be going up at this point in our cycles. Not down. My doctor just told me that my bone marrow was lazy, but that was only because a BMB the week before showed that I had zero blasts.

I hope Jo's levels start coming up soon.

Debbie:

From all of the various concerns that I have seen on this list, this one is the most stated. No problem with that -- if you have concerns we want to help. Recognize that the numbers are measuring a type of recovery. Not from cancer but from chemo. In taking out the cancer cells (blasts), the chemo has to take out the good cells, and to some extent this might even get into the bone marrow itself. Low numbers are expected at a certain point -- if that did not happen then the chemo would not be working. The very low numbers might even indicate that the chemo has impacted the mutant stem cell. No telling and it is hard to get opinions on this.

The major point is, just like with any other healing process, some people take longer than others, and some people have setbacks. It is easy for me to say -- don't be alarmed. I know I was when they said it would be a few days and it turned out to be a few weeks. It has been my experience that the med folks for some reason tend to give the earliest dates. I guess what they should give is an average time and a range. I would expect the range would be something like plus or minus three weeks. That would be a range of about six weeks. Just a guess on my part, but bone marrow healing is not a very systematic thing -- everyone is different. The one good things is that in the five years I have been on this list we have not lost anyone to a failure to recover blood numbers that I know of. Also, if it was a sign of a relapse they would be seeing blasts in the blood and dramatic number changes. I hope this helps -- dave

Thanks guys and I guess you are correct. MDA called her yesterday afternoon and cancelled her appt. with the doctor for today and rescheduled for 9/26. I told her that must mean that they are not concerned with relapse at this point. They did tell her that if the numbers were not coming up and continuing up by then, another BMB would be done. Maybe she has lazy bone marrow also, I hope that is what it is, but I also think she does too much and doesn't give her body enough rest. Her last chemo was the first week of August.

Well, there are some that theorize that strenuous exercise is good during chemo. I cannot believe that because major exercise that makes you ache breaks down your muscles --- that is what the aching is all about. Blood is essential to build the muscles back up. If the blood goes for that it cannot go to sustaining the internal organs. Some exercise is good, obviously. But during chemo is not time to run a marathon. Moderation and some heavy resting would be my recommendation -- if you can get a collar on her. -- dave

it's not really exercise, Dave. She has people over on the weekends, she goes to the Friday night football games, etc. As soon as her WBC/ANC is high enough for her to be ok around people (and sometimes even when it is a little too low) she starts to have get togethers with friends and such on the weekends. Even though she says they do all the work, I can tell you that they do not and she is absolutely exhausted the next day. During the week she keeps her 1 year old grandson probably 3 days a week for about 3-4 hours. He is a good baby but lets face it, babies are just normally a lot of work no matter what.

I know you are supposed to live as normal as possible but I think it is just too much. I can't get through to her that she can't be doing this. Until something adverse happens (like ending up in the hospital) she will continue to do this because she doesn't agree that it is hurting her and she says as long as she can do it, she will.

Is she right? As long as it is not adversely affecting her, she should continue to do these things? I know she doesn't ask the doctors because she doesn't want to hear the answer if they don't agree with her. I can't keep griping at her, it's her life but it scares me to death to think what could happen. She so wants to be normal again.

My son is the same way and although it is hard, I try to not let it bother me as he is a grown man and can make up his own mind.

I pray nightly for Jo to return to good health and hope her numbers come up real soon.

Hugs to you

Karen

I'm jealous!!! I've been scared to death to be around people and catch any sort of cold or sickness, so I've been holed up in my house for the last 3 months. I would worry about her too, but I also think that it's great that she isn't letting this disease keep her from living. I wish I had less anxiety and would go out more.

Prayers for Jo

Dave

I just shared your link on my facebook page and asked all my friends to donate and share it too.

It would sure be nice if we could get something going like the ice bucket challange to raise awareness for AML like it has for ALS.

Karen

Debbie -- I would say it all depends on her blood numbers and her stamina. If she is neutropenic then for sure these contacts with the outside world should be reduced. If this is the case and she keeps it up it is only a matter of time before she will be running a fever and perhaps need to go back into the hospital for some IV antibiotics.

On the other hand, it her blood numbers are out of the danger range, then a lot of these activities can be positive for her. I would say that anyone (even a "healthy" person) can over-do it. The problem is that chemo has a detrimental effect on all of our organs, and it is difficult to know which one (if any) is going to give us trouble. My problem seems to be my hears -- I get winded very quickly, and even when I take a break, if I continue to do anything strenuous, I pay the price. There have been times I have had to lay out on the grass, or just crawl into the garage. I think I am listening to my body, but sometimes it is not yelling loud enough. For sure, she should not push it if she is feeling tired or fatigued. But from your point of view, since you have already talked to her about it, I do not see what you can do. Maybe if you get a chance say something to one of her doctors or her nurse practitioner about it. They will know the details, the numbers and all, and she will probably have more of a tendency to listen to them. -- daveB

Dear Al,

I think everyone approaches the neutropetic phase somewhat differently. My doc's said in a perfect scenerio I should be be exposed to people outside of the family I lie with throughout my treatment nine months). They added that even though my ANC reflected a low normal it was not a "normal" immune ststem low normal. I also personally witnessed several of my peers in treatment pass due to infections-quit a few actaully.

This convinced me to be dilagent. I also was blessed to telework full time so that was easy. For me it was not worth the risk.

Julie

Correction:

My doc's said in a perfect scenerio I should NOT be exposed to people outside of the family I live with throughout my treatment of nine months

Thanks guys for all the information. I have decided to do what you guys suggest and let her be without me complaining she is doing too much. So far she has done well with no infections so she must be doing something right.

She's still down quite a bit and is so ready to be done with the treatment but she is getting there. She did start anti-depressants but she says they don't seem to help her much.

You guys are a great support to me and my sister. Thank you very much!

Debbie