[Carruth]

Thank you, Jack. You must miss your wife so much! How wonderful you were to her. Hope you are doing well.

[Carruth]

Deb,
I know you are missing your dad. It will probably take a while to really sink in for us, huh? Thinking about you, too. Thank you.

[Carruth]

My mil is still getting red blood about every two to three weeks. A little over two weeks ago she got three units and then more today. She’s just about to have her sixth round of vidaza, and we had hoped by this time the transfusions would be unnecessary or at least farther apart. It hasn’t happened. Her white count hovers around .8, and the platelets go from 4 to 28, depending on the nadir and recovery. Has anyone had a good response after the sixth round? I know for most it’s after the fourth or fifth.

[Carruth]

So happy about your baby! Congratulations! And praying with you that all your counts go back to normal soon and you can have a wonderful life with your family.

[Carruth]

June,

I’m so sorry your dad hasn’t responded. My mil just finished her fifth round last week and is doing a little better. Her counts haven’t really improved, but she’s not having constant fevers and hasn’t been back in the hospital since the last round. She’s also gained some weight back–she was down to 112 from 137. I guess vidaza is working, but we won’t really know ’til the bmb in a few weeks. Her counts yesterday (7/28) were wbc 1.0, hgb 9.4, hct 26 and platelets 9. She’s still getting transfusions about every two weeks, give or take.

She’s still very weak and doesn’t go anywhere except the doctor’s office with someone driving her. But, she can wash a few dishes and putter around the house with her fancy walker. So for her, it’s an improvement from the last several months. Her counts haven’t gone up on their own, however, so I guess the next few weeks will tell. We’ll see…

The vidaza dosage is still reduced and this time he waited five weeks in between rounds instead of six. You all know how it is, you’re afraid to say yes it’s working. But for today, she’s alive and kicking!

I know how hard and frustrating this all can be. Life becomes about bloodwork, doctor visits, transfusions, etc. I’m trying to do a good job handling what God has put before me. We don’t understand it, but it’s what we’ve been given.

Has anyone read the book “The Shack”? Kind of strange, but interesting at the same time. It gives somewhat of an eternal perspective.

June, has the doctor recommended dacogen? From everything I’ve read, my mil’s doctor should have stopped the vidaza long before now, but he hung in there. And she has gotten better. Maybe go through with the fifth round if that is when the change happens. Who knows? I guess each patient and his/her doctor have to decide.

Hang in there, June. Let us now what you guys decide.

[Carruth]

My mil was hospitalized for fever and was trembling terribly. After many tests and cultures, they found staph in her blood and also pneumonia. With very strong antibiotics, she got better. The shaking comes with fever and weakness, we have noticed.

What about procrit shots for the rbc? Hope he is better soon.

Stacey Carruth

[Carruth]

Blood counts today–fourth round of vidaza was June 16-20. She did miss one day of chemo because of fever, and the dosage was reduced from 150 to 125 and was six weeks apart form the third round. Anyway, rbc-10.2, wbc 1.0, and platelets 6. She had blood and platelets nine days ago. She is eating a little better, but not much, and still has no energy whatsoever. She can only sit up for a little while then has to get back in bed. She’ll see the doctor Friday to determine if she does chemo next week or waits another week or two.

The nurse manager on the oncology wing told me she probably won’t get any stronger. Just when she might begin to feel better, it’ll be time for chemo again. I suppose the nurse was speaking from experience. And my mil is very frail and weak anyway.

Has anyone had long-term success with vidaza who had relapsed aml? I keep finding people who have had cmml or mds.

Jack, I understand your confusion. I feel the same way usually. But I have read of many people who saw immediate improvement in their counts. Some were as soon as after the first treatment as in Shari’s dad’s case. The statistics show that 90% of people who have a positive response will have it within four to six months. So it can take five or six rounds, but doesn’t have to necessarily.

Shari, did your dad have any side effects from the vidaza? How did he feel?

Thanks,
Stacey Carruth

[Carruth]

Jack, that’s a great way to look at it. Thanks for your perspective. I think there’s a lot of wisdom in what you’ve said.

I have been researching results from vidaza and wasn’t sure how others counted. If I read that vidaza “worked” for Sally Sue for fourteen months, does that mean from the time she began it, or from the time she saw results? That’s what I meant with my question. Especially given that we haven’t really seen any results yet for my mil and it’s been over four months. Her transfusions have not gotten farther apart–in fact they’ve gotten closer together. Add that in with all the fevers, infections, etc. The scary part to me was that I’ve read many people’s experiences who said it worked for a short period of time like six, eight, or ten months. So if that will be the case for my mil, do we count these past four months? Which would mean half the time is gone already? I hope not! Does any of this make any since?

Sorry if I’m being repetitive. I am constantly trying to make sense of all of this, and I guess it isn’t possible. We just have to take each day and count it a blessing. My mil has started to eat a little better in the last few days. Hopefully that is an indication things are getting better.

Thanks to everyone for your patience.

Stacey Carruth

[Carruth]

I’ve heard of the book you mentioned, Bev. I want to read it. I think she’s having trouble believing how bad off she is, if that is possible. She keeps thinking that “any day now I’ll be better.” The attitude is great, but physically it just hasn’t happened. She hasn’t been part of a church for years, and all the friends from our church work or are caring for their own parents. It’s almost to the point where she needs nursing care. Her sons can’t get in the shower with her, or do personal things, if you know what I mean. I’m having some medical issues myself and have had lots of appointments, etc. I’m a teacher, so I go back to school soon.
We’ve been able to spread out driving her to chemo and blood work appts, but the personal care is another matter. Everyone she knows works or is elderly and/or having serious medical problems as well.

About the Ensure/Boost, she won’t drink them because she says they are too sweet. She’s eating very little, and frowns at most any suggestion. I agree with “treat the patient not the numbers”, but the doctor is going by the numbers. Not that they are that good anyway! He just keeps saying this is all normal. I think he should have to spend a few days in the trenches!

Don’t get me wrong, he’s a wonderful doctor. I just wish he could see the day to day struggles she goes through. I’ve read many experiences where the doctor stopped the chemo because of fewer complications. Hopefully she will round this corner soon and it will all have been worth it for her.

Thanks to both of you. I’ll keep you posted.

[Carruth]

How long have you been on dacogen?

[Carruth]

Update–Chemo resumed today even with a fever this a.m above 102. Then the doctor admitted her to the hospital. Low counts, so she’s getting platelets and maybe blood. We’ll see…

[Carruth]

My mother-in-law has this disease and the only way we cope is by the grace and mercy of God. I couldn’t make it without Him, and sometimes barely do anyway! I can’t begin to imagine how you must feel. I know that many people live a long time, and many get remissions or cures. You have youth on your side. Transfusions alone can keep you going a long time, then you can face the treatment appropriate for you after your baby is born. This is a wonderful place to ask questions, research, learn and get support from people who understand. This forum enabled me to even know the right questions to ask.

Again, I can’t imagine how overwhelmed you must be. I have Meniere’s disease, which has taken many years and some hearing from me. I was bedridden for over two years from vertigo. I just kept telling myself that it was temporary– that things would get better. All I was required to do was make it through today. I’m not remotely comparing that to your diagnosis, but I have been very sick before with no end in sight.

These people can offer you information, support and hope. God can give us peace. I will think of you and pray for you and your baby. You have so much to live for. Do you know the sex, yet? And the name? Please let us know. Many blessings to you. It will get better! Hang in there!

Sincerely,
Stacey Carruth

[Carruth]

Is it correct that as the blasts dramatically increase in the marrow they can get into the blood? From my mil’s rapidly dropping counts we assumed the blasts were increasing in the marrow and maybe were already in the blood. When she was first diagnosed AML, her bone marrow blasts increased from under 10% to over 25% in less than two weeks. This time her counts were dropping even faster. With all her symptoms (loss of appetite, weight loss, increased weakness, fatigue, and sleeping), we assumed the AML was progressing quickly. Her doctor indicated this, as well. That’s why he began the vidaza and is continuing it despite her weakness. I did catch him in the hallway at the hospital and he said if this treatment doesn’t work, it’s basically over.

We’re hoping the vidaza kicks in and she begins to show some dramatic improvement soon. She’s been hospitalized twice (just recently for ten days), had fevers just about every week, several falls and visits to the emergency room, stitches, etc. It’s been tough, especially on her. Hopefully it will all improve soon.

I read lots of info on blasts, etc, from Neil’s posts here on the forum. I certainly could be misunderstanding some of the details! Not hard to do.

Anyway, we’ll see. BTW, has anyone been keeping up with the college world series? Baseball? How ’bout those Tigers! I’m from Baton Rouge–needless to say we are big fans.

Again, please clarify anything I seem to be confused about. Thanks!

Carruth

[Carruth]

Hi again,

My mil had a bmb in November ’07 (eight months ago) and the blast level was 7%. She didn’t begin vidaza until March, and her counts had been dropping pretty quickly. That’s why we assumed the blasts might be in the peripheral blood. Also, to have a “complete” response to vidaza the blood has to show no blasts. A “partial” response has to show no blasts or a rise in all blood lines for a certain amount of time. We thought the doctor was checking the levels since she’s nearing the critical time frame in the vidaza treatment.
I know the simple thing to do would be “just ask the doctor.” It’s hard to talk to him in front of my mil. She doesn’t want to know much–especially anything negative. She’s so hopeful and can’t emotionally handle the possibility that it might not work. And he won’t say much without her being around–privacy issues, I guess. Only time will tell… It’s just very hard seeing her suffer so and wondering if the chemo is working.
I know you’ve been through the mill as well. Thank you so much for helping me better understand some things.

Always learning,
Carruth

[Carruth]

Thanks Jack, for the info. How do you know about blasts in the blood if it isn’t on the line that says “blasts”? Is there a separate test for them? Her regular blood counts from the dr’s office don’t list “blasts”, but one from the hospital did. I’m trying to learn about all this so thanks for the help.

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