Re: A little freaked out

[Guest guest]

I can't speak to whether or not you have cause for alarm, other than to say to trust your oncologist and ask a lot of questions. But I do want to send you courage. Yesterday Zach--in remission from AML over a year and half now with nothing but healthy counts--woke up pale and lethargic for no apparent reason and slept all morning long. He was fine by the afternoon. The specter of cancer is terrifying; the threat of its return is unthinkable. Please know that my thoughts are with Chloe and with you.

On Sep 20, 2010, at 2:38 PM, shelly d wrote:

If any of you are on the ALL-Kids group, this is a repeat, I am just cutting and pasting this:

Okay, so Chloe had her three month check up today at our Hem/Onc clinic. She has been doing well, we had that weird incidence two weeks ago with what looked like Petachaie (sp?) but when we took her for counts they were fine, and the spots were gone within two days (only a patch on her one arm). She hasn't been sick, hasn't been acting weird, or tired, or loss of appetite. But of course I always worry when clinic day comes. She finished treatment March of 2009 and we are on the three month check up schedule now. Her counts were okay. Nothing too out of the ordinary for her (her WBC was a little lower than usual, but sometimes it is) Her WBC was 2.9 (two weeks ago was the same but the three month last time was 3.4) Her platelets were lower this time than two weeks ago, still within normal range (265) but two weeks ago were 286, and around the same three months ago. Her Hgb was 13.8 which seems okay, but two weeks ago was 14.5. I am freaking out. Our Onc didn't seem too concerned, but she did set her up for a blood test in six weeks which didn't ease my freaking out at all....am I overreacting on the freak out, or do I have cause for alarm? Anyone???

[Guest guest]

I'm sorry you're freaking out and I understand completely. has been OT since Aug. 2008. Last spring he was sick for a couple of days and then had petechiae from head to toe. I took him to the pediatrician for counts. I was already in planning mode, trying to figure out how to wean my baby and thinking about who would stay with my other kids because I was sure he had relapsed. My hands shook for about two hours until we got the numbers back. I didn't pay any attention to anything but his platelet count which was well within normal range.

You might want to make a call to your Chloe's oncologist to ask why she wants counts again in six weeks. Maybe she thought that checking again in six weeks would give you peace of mind. I think it would put me in freak out mode, too! I think the average person's blood counts must fluctuate all the time but we aren't aware of it because they're not getting regular CBC's. The numbers you listed all look good to me. Try not to freak out. Easier said than done, though.

Keep us updated!

Ann

> > From: sunshels@...> Date: Mon, 20 Sep 2010 21:38:18 +0000> Subject: [ ] A little freaked out> > If any of you are on the ALL-Kids group, this is a repeat, I am just cutting and pasting this:> > Okay, so Chloe had her three month check up today at our Hem/Onc clinic. She has been doing well, we had that weird incidence two weeks ago with what looked like Petachaie (sp?) but when we took her for counts they were fine, and the spots were gone within two days (only a patch on her one arm). She hasn't been sick, hasn't been acting weird, or tired, or loss of appetite. But of course I always worry when clinic day comes. She finished treatment March of 2009 and we are on the three month check up schedule now. Her counts were okay. Nothing too out of the ordinary for her (her WBC was a little lower than usual, but sometimes it is) Her WBC was 2.9 (two weeks ago was the same but the three month last time was 3.4) Her platelets were lower this time than two weeks ago, still within normal range (265) but two weeks ago were 286, and around the same three months ago. Her Hgb was 13.8 which seems okay, but two weeks ago was 14.5. I am freaking out. Our Onc didn't seem too concerned, but she did set her up for a blood test in six weeks which didn't ease my freaking out at all....am I overreacting on the freak out, or do I have cause for alarm? Anyone???> > > > > ------------------------------------> >

[Guest guest]

I understand your fear. Its hard not to worry when you

have been through what you have. Everyone's counts fluctuate on a regular

basis but because its something that we have been vigilant about watching, when

our childrens do it, we freak out and understandably so. Whether it be a

virus, a sniffle, something they ate, etc there are many things that affect the

CBC.

My son , was diagnosed with AML when he was 2

1/2. It will have been 10 yrs on Jan 30th. It doesnt stop me from

worrying. He still gets petechiae on a regular basis, apparently its a

" Down Syndrome " thing. He also has a higher than normal Hgb,

have been told that is also a " Down Syndrome " thing. I dont

think that its something that ever leaves us, the fear is always there that

they will relapse. We still see the Oncologist on a yearly basis, partly

because we have other yearly follow ups at the same time, and partially (I think)

because our Oncologist likes to see how well is doing as he is a success

story. I like to think that it reminds him of the reason he went into Oncology

(plus we really like him).

From:

[mailto: ] On Behalf Of

Ann Bremer

Sent: Monday, September 20, 2010 10:54 PM

Subject: RE: [ ] A little freaked out

I'm sorry you're freaking out and I understand

completely. has been OT since Aug. 2008. Last

spring he was sick for a couple of days and then had petechiae from head to

toe. I took him to the pediatrician for counts. I was already in

planning mode, trying to figure out how to wean my baby and

thinking about who would stay with my other kids because I was

sure he had relapsed. My hands shook for about two hours until we

got the numbers back. I didn't pay any attention to anything but his

platelet count which was well within normal range.

You might want to make a call to your Chloe's oncologist to ask why she

wants counts again in six weeks. Maybe she thought that checking

again in six weeks would give you peace of mind. I think it would

put me in freak out mode, too! I think the average person's blood counts

must fluctuate all the time but we aren't aware of it because they're not

getting regular CBC's. The numbers you listed all look good to

me. Try not to freak out. Easier said than done, though.

Keep us updated!

Ann

>

> From: sunshels@...

> Date: Mon, 20 Sep 2010 21:38:18 +0000

> Subject: [ ] A little freaked out

>

> If any of you are on the ALL-Kids group, this is a repeat, I am just

cutting and pasting this:

>

> Okay, so Chloe had her three month check up today at our Hem/Onc clinic.

She has been doing well, we had that weird incidence two weeks ago with what

looked like Petachaie (sp?) but when we took her for counts they were fine, and

the spots were gone within two days (only a patch on her one arm). She hasn't

been sick, hasn't been acting weird, or tired, or loss of appetite. But of

course I always worry when clinic day comes. She finished treatment March of

2009 and we are on the three month check up schedule now. Her counts were okay.

Nothing too out of the ordinary for her (her WBC was a little lower than usual,

but sometimes it is) Her WBC was 2.9 (two weeks ago was the same but the three

month last time was 3.4) Her platelets were lower this time than two weeks ago,

still within normal range (265) but two weeks ago were 286, and around the same

three months ago. Her Hgb was 13.8 which seems okay, but two weeks ago was

14.5. I am freaking out. Our Onc didn't seem too concerned, but she did set her

up for a blood test in six weeks which didn't ease my freaking out at all....am

I overreacting on the freak out, or do I have cause for alarm? Anyone???

>

>

>

>

> ------------------------------------

>

>

[Guest guest]

has been off treatment for five years now and I still look for "signs". I suppose that never goes away. It is your right as a parent to freak out,

[Guest guest]

Freaking out is your right as a parent. But, I will tell you that these types

of fluctuations are pretty normal. I have been giving support for years and I

see it all the time. It always freaks out the parents and the docs don't seem

to get that. Hang in there.

>

> If any of you are on the ALL-Kids group, this is a repeat, I am just cutting

and pasting this:

>

> Okay, so Chloe had her three month check up today at our Hem/Onc clinic. She

has been doing well, we had that weird incidence two weeks ago with what looked

like Petachaie (sp?) but when we took her for counts they were fine, and the

spots were gone within two days (only a patch on her one arm). She hasn't been

sick, hasn't been acting weird, or tired, or loss of appetite. But of course I

always worry when clinic day comes. She finished treatment March of 2009 and we

are on the three month check up schedule now. Her counts were okay. Nothing

too out of the ordinary for her (her WBC was a little lower than usual, but

sometimes it is) Her WBC was 2.9 (two weeks ago was the same but the three

month last time was 3.4) Her platelets were lower this time than two weeks ago,

still within normal range (265) but two weeks ago were 286, and around the same

three months ago. Her Hgb was 13.8 which seems okay, but two weeks ago was

14.5. I am freaking out. Our Onc didn't seem too concerned, but she did set

her up for a blood test in six weeks which didn't ease my freaking out at

all....am I overreacting on the freak out, or do I have cause for alarm?

Anyone???

>

[Guest guest]

I am in same boat with the worry part as I am sure we all are! My daughter at

almost one year post treatment. Anyone have current statistics on relapse with

DS/AML?

Sent from my iPhone

[Guest guest]

My daughter is almost 11 years post treatment and I still get nervous when she get petichaie or is too tired, I don't think the fear ever leaves.

From: Stacie Akridge <stacie.akridge@...>Subject: Re: [ ] Re: A little freaked out" " < >Date: Sunday, January 16, 2011, 9:00 AM

I am in same boat with the worry part as I am sure we all are! My daughter at almost one year post treatment. Anyone have current statistics on relapse with DS/AML?Sent from my iPhone

[Guest guest]

Our oncologist said about 20% chance of relapse. (Z had AML too.)

son

Associate Professor of English

Graduate Literature Coordinator

San Francisco State University, Humanities 537

1600 Holloway Avenue

San Francisco, CA 94132

(415) 338-3107

On Jan 16, 2011, at 6:00 AM, Stacie Akridge wrote:

I am in same boat with the worry part as I am sure we all are! My daughter at almost one year post treatment. Anyone have current statistics on relapse with DS/AML?

Sent from my iPhone

[Guest guest]

No stats but it will be 10 years on January 30th since was diagnosed and is doing awesome!!Sent from my iPhoneOn 2011-01-16, at 2:14 PM, C son <jpaulson@...> wrote:

Our oncologist said about 20% chance of relapse. (Z had AML too.)

son

Associate Professor of English

Graduate Literature Coordinator

San Francisco State University, Humanities 537

1600 Holloway Avenue

San Francisco, CA 94132

(415) 338-3107

On Jan 16, 2011, at 6:00 AM, Stacie Akridge wrote:

I am in same boat with the worry part as I am sure we all are! My daughter at almost one year post treatment. Anyone have current statistics on relapse with DS/AML?

Sent from my iPhone

[Guest guest]



is 6 years out from ALL and our oncologist told us that if she should ever get cancer again it would be a totally different incident. I am more freaked out about the birth control pills we put her on because she isn't quite up on how to handle her periods at 13.

Re: [ ] Re: A little freaked out

No stats but it will be 10 years on January 30th since was diagnosed and is doing awesome!!

Sent from my iPhone

On 2011-01-16, at 2:14 PM, C son <jpaulson@...> wrote:

Our oncologist said about 20% chance of relapse. (Z had AML too.)

son

Associate Professor of English

Graduate Literature Coordinator

San Francisco State University, Humanities 537

1600 Holloway Avenue

San Francisco, CA 94132

(415) 338-3107

On Jan 16, 2011, at 6:00 AM, Stacie Akridge wrote:

I am in same boat with the worry part as I am sure we all are! My daughter at almost one year post treatment. Anyone have current statistics on relapse with DS/AML?Sent from my iPhone

[Guest guest]

Happy Belated Birthday Jann! You are an amazing lady and you inspire all of us!

Dolezan

Benton Harbor, MI

Thanks for passing this on to Jan Rick. I always love hearing about her. Do you happen to have a blog?

[Guest guest]

I can't comment on the frequency or relapse and my story is NOT about

young children with AML.

My daughter was diagnosed with AML when she was about 26 and treated by

a local oncologist we know and respect. Her remission was great. She

grew her hair back and was perhaps happier to be at her older brother's

wedding a couple of years later.

Not long after that, the AML returned and the medical advice was that

re-treatment with chemo would not be lasting .. based upon the long term

failure the first time. The only possible path would be a bone marrow

(stem cell) transplant and that would be very difficult and extremely risky.

Jan had the transplant, with the same brother being the donor. He took

meds for a week to increase the number of stem cells circulating with

his blood and then spent a day on a blood cell separator which took his

blood in, captured seven million stem cells, and gave him the rest back.

The transplant was every bit as challenging as promised. It was done at

Yale and took a woman who had done a remarkable build-up from the chemo

she had to keep her alive until the transplant. She was back to hiking

miles on hilly trails. After the transplant, she wasted away, losing a

pound a week, but a couple of months out, it all turned around.

Yesterday was her 38th birthday. She and I went on a hike in the local

hills looking for waterfalls. It's been raining a lot and we saw many

of them as well as taking a high traverse that went up and down

repeatedly. Jan said that was just like being dribbled like a basketball.

She is now six plus years out. She is on no medication. We are working

on diet and exercise to keep her weight in control with some success.

She lives as independently as she can, having her own apartment and

about five hours a week of life-skills help to keep things on track.

She spends two days a week at a workshop which is both educational and

social. The ASL she learned there has helped her in her activity the

other three weekdays when she works as a volunteer in an adult program

for multi-handicapped people, some of them deaf or mute. She has

received awards for her work from the agency and also from the four

county regional center which oversees the care of thousands with

development disability.

For those with in DS past 20, AML is not more common than in the general

population so far as I know. That is very different than for those

under 10. Other cancers with only a few exceptions are significantly

rarer for those with DS than those without. That difference is about

ten times.

The bone marrow route is not a place you ever want to be, but it can be

a miracle. We are not worried about relapse because she now has her

brother's blood system, but like everyone we don't know the turns of the

future and only have to try to prepare for them or react when they happen.

Rick .. dad to 38 year old Jan

[Guest guest]

I always enjoy hearing about Jan, you must be very proud of her. Happy Belated Birthday to her, glad to hear she is doing well.

Blessings to your family,

Thirza Ritter

On 1/17/11 10:41 PM, " Rick Dill " <rdill@...> wrote:

I can't comment on the frequency or relapse and my story is NOT about

young children with AML.

My daughter was diagnosed with AML when she was about 26 and treated by

a local oncologist we know and respect. Her remission was great. She

grew her hair back and was perhaps happier to be at her older brother's

wedding a couple of years later.

Not long after that, the AML returned and the medical advice was that

re-treatment with chemo would not be lasting .. based upon the long term

failure the first time. The only possible path would be a bone marrow

(stem cell) transplant and that would be very difficult and extremely risky.

Jan had the transplant, with the same brother being the donor. He took

meds for a week to increase the number of stem cells circulating with

his blood and then spent a day on a blood cell separator which took his

blood in, captured seven million stem cells, and gave him the rest back.

The transplant was every bit as challenging as promised. It was done at

Yale and took a woman who had done a remarkable build-up from the chemo

she had to keep her alive until the transplant. She was back to hiking

miles on hilly trails. After the transplant, she wasted away, losing a

pound a week, but a couple of months out, it all turned around.

Yesterday was her 38th birthday. She and I went on a hike in the local

hills looking for waterfalls. It's been raining a lot and we saw many

of them as well as taking a high traverse that went up and down

repeatedly. Jan said that was just like being dribbled like a basketball.

She is now six plus years out. She is on no medication. We are working

on diet and exercise to keep her weight in control with some success.

She lives as independently as she can, having her own apartment and

about five hours a week of life-skills help to keep things on track.

She spends two days a week at a workshop which is both educational and

social. The ASL she learned there has helped her in her activity the

other three weekdays when she works as a volunteer in an adult program

for multi-handicapped people, some of them deaf or mute. She has

received awards for her work from the agency and also from the four

county regional center which oversees the care of thousands with

development disability.

For those with in DS past 20, AML is not more common than in the general

population so far as I know. That is very different than for those

under 10. Other cancers with only a few exceptions are significantly

rarer for those with DS than those without. That difference is about

ten times.

The bone marrow route is not a place you ever want to be, but it can be

a miracle. We are not worried about relapse because she now has her

brother's blood system, but like everyone we don't know the turns of the

future and only have to try to prepare for them or react when they happen.

Rick .. dad to 38 year old Jan