Re: Methotrexate and maintenance

[Guest guest]

My son is off treatment, but he has problems with very dry lips and extra skin on the lips peeling off. It is worse when he eats less, and it has more to do with the amount of food passing through his lips and kind of sanding off the skin than any dehydration. There is actually a name for this condition, but I don't recall the name.Methotrexate was so hard on ; he never tolerated more than 30-40% of his max dose or his ANC would crash. was often sick through maintenance. Zofran pretty much took care of the nausea. He wouldn't eat much; so the opposite of yours. I don't know if I'm much help, but I d know that chemo can affect our kiddos much differently than typical kiddos, and our oncs are sometimes slow to recognize that.BethFrom: breakofdayinaz <breakofdayinaz@...> Sent: Tue, August 31, 2010 3:54:42 PMSubject: [ ] Methotrexate and maintenance

Our Trevor has been in maintenance for 18 months. Diagnosed July 2008, ALL.

Three almost four weeks ago his methotrexate dose was increased to 100%. Ever since then he has been sick about every other day, but sometimes for a couple days in a row. We have been giving Zofran religiously, but it doesn't seem to be helping. He is a little congested, so we have a humidifier going in his room. When he is going to be sick he wakes in the night and wants to drink several glasses of water. We refrain from giving him too much since he usually just throws it all back up. He ends up throwing up a couple of times, sleeping the rest of the morning, and then he's ready by the afternoon (as if he was never sick).

Two weeks ago he had a lab draw and everything looked good. ANC at 672. So the doctor believes he has a virus, but we are not so sure. Has anyone's kiddo taken leukovorin during maintenance? We keep asking the doctor, but she says it should not be needed. Just trying to figure out if it is a virus, medicine, or something completely different.

The other two odd things is his lip is raw. I'm sure it is having a hard time healing from the chemo, but the doctor keeps saying he is dehydrated. I am not sure how this can be since he is drinking and urinating all day (and nightly). The other thing is he wants to eat pretty much continually. Carbohydrates and dairy. Almost as if he is on steroids all the time.

Know this is a lot. Looking for any help.

Thank you-

Dawn Bird, mom to Trevor (DS,5), a (3), and (10 month)

[Guest guest]

I'm sorry Trevor is sick. My son is off treatment, but he was nauseated throughout maintenance. The oncs didn't believe that it could be from the maintenance drugs, but it clearly was. Fortunately, regular Zofran helped him. I'm sorry it's not working for Trevor. He also had Phenergan sometimes; have they mentioned trying that? It did make very sleepy, though.

as also sick a lot through maintenance. He had his IgG levels checked and was borderline low, and monthly IVIG helped him a lot.

never could tolerate more than 30-40% of his ideal mtx dose; it was too hard on him and his ANC just never held with more. I am not sure what to tell you with the ANC being high enough, other than to keep an eye on that.

also has peeling lips. It's not so much chapped as just peeling a lot. I've heard this is something called cheilitis or eczema of the lips. For it's best if he eats well. has never eaten well and has malabsorption issues.

I doubt this is much help, but it's all I know. Hang in there!

Beth

[ ] Methotrexate and maintenance

Our Trevor has been in maintenance for 18 months. Diagnosed July 2008, ALL.Three almost four weeks ago his methotrexate dose was increased to 100%. Ever since then he has been sick about every other day, but sometimes for a couple days in a row. We have been giving Zofran religiously, but it doesn't seem to be helping. He is a little congested, so we have a humidifier going in his room. When he is going to be sick he wakes in the night and wants to drink several glasses of water. We refrain from giving him too much since he usually just throws it all back up. He ends up throwing up a couple of times, sleeping the rest of the morning, and then he's ready by the afternoon (as if he was never sick).Two weeks ago he had a lab draw and everything looked good. ANC at 672. So the doctor believes he has a virus, but we are not so sure. Has anyone's kiddo taken leukovorin during maintenance? We keep asking the doctor, but she says it should not be needed. Just trying to figure out if it is a virus, medicine, or something completely different.The other two odd things is his lip is raw. I'm sure it is having a hard time healing from the chemo, but the doctor keeps saying he is dehydrated. I am not sure how this can be since he is drinking and urinating all day (and nightly). The other thing is he wants to eat pretty much continually. Carbohydrates and dairy. Almost as if he is on steroids all the time.Know this is a lot. Looking for any help.Thank you-Dawn Bird, mom to Trevor (DS,5), a (3), and (10 month)

[Guest guest]

Thank you, Beth. Your info is very helpful. It gives me things to think about and watch out for. Trevor had a treatment today. My discussion with the Oncologist went well. She was equally concerned that he was continuing to get sick. Agreeing that it could very well be the Methotrexate. His ANC was still good 1100, but his bilirubin was high. So he is in fact having trouble with the Methotrexate and we are taking a break from it and the 6-MP for a week to see if it comes back down. This is also why the Zofran was not effective. We are hoping his lips get better after taking this break too.We also decided he does need to see someone in GI. To rule out celiac disease or other digestion issues. Does have CD?Thank you again,

Beth.DawnFrom: B DeHoff <dehoff5@...>Subject: Re: [ ] Methotrexate and maintenance Date: Wednesday, September 1, 2010, 5:46 AM

I'm sorry Trevor is sick. My son is off treatment, but he was nauseated throughout maintenance. The oncs didn't believe that it could be from the maintenance drugs, but it clearly was. Fortunately, regular Zofran helped him. I'm sorry it's not working for Trevor. He also had Phenergan sometimes; have they mentioned trying that? It did make very sleepy, though.

as also sick a lot through maintenance. He had his IgG levels checked and was borderline low, and monthly IVIG helped him a lot.

never could tolerate more than 30-40% of his ideal mtx dose; it was too hard on him and his ANC just never held with more. I am not sure what to tell you with the ANC being high enough, other than to keep an eye on that.

also has peeling lips. It's not so much chapped as just peeling a lot. I've heard this is something called cheilitis or eczema of the lips. For it's best if he eats well. has never eaten well and has malabsorption issues.

I doubt this is much help, but it's all I know. Hang in there!

Beth

[ ] Methotrexate and maintenance

Our Trevor has been in maintenance for 18 months. Diagnosed July 2008, ALL.Three almost four weeks ago his methotrexate dose was increased to 100%. Ever since then he has been sick about every other day, but sometimes for a couple days in a row. We have been giving Zofran religiously, but it doesn't seem to be helping. He is a little congested, so we have a humidifier going in his room. When he is going to be sick he wakes in the night and wants to drink several glasses of water. We refrain from giving him too much since he usually just throws it all back up. He ends up throwing up a couple of times, sleeping the rest of the morning, and then he's ready by the afternoon (as if he was never sick).Two weeks ago he had a lab draw and everything looked good. ANC at 672. So the doctor believes he has a virus, but we are not so sure. Has anyone's kiddo taken leukovorin during maintenance? We keep asking the doctor, but she says it should not be needed. Just trying to figure out if it is a virus, medicine, or something completely different.The other two odd things is his lip is raw. I'm sure it is having a hard time healing from the chemo, but the doctor keeps saying he is dehydrated. I am not sure how this can be since he is drinking and urinating all day (and nightly). The other thing is he wants to eat pretty much continually. Carbohydrates and dairy. Almost as if he is on steroids all the time.Know this is a lot. Looking for any help.Thank you-Dawn Bird, mom to Trevor (DS,5), a (3), and (10 month)

[Guest guest]

Hi Dawn

My son , 9 years old, is in LTM and only takes 58% methotrexate. When the

dose is increased his counts are affected, and he gets lip sores and abdominal

pain. His bilirubin also was a little high. He feels a lot better on the lower

dose. He is seen by a GI doctor due to abdominal pain and bloody stools which

he has experienced on several occassions. We were giving zofran but it didn't

seem to help him. I hope Trevor starts to feel better once he has a little

break.

Jo

---- Dawn Rink <breakofdayinaz@...> wrote:

> Thank you, Beth.  Your info is very helpful.  It gives me things to think

about and watch out for.  Trevor had a treatment today.  My discussion with

the Oncologist went well.  She was equally concerned that he was continuing to

get sick.  Agreeing that it could very well be the Methotrexate.  His ANC was

still good 1100, but his bilirubin was high.  So he is in fact having trouble

with the Methotrexate and we are taking a break from it and the 6-MP for a week

to see if it comes back down.  This is also why the Zofran was not effective.

 We are hoping his lips get better after taking this break too.

> We also decided he does need to see someone in GI.  To rule out celiac

disease or other digestion issues.  Does have CD?

> Thank you again, Beth.Dawn

>

>

>

> From: B DeHoff <dehoff5@...>

> Subject: Re: [ ] Methotrexate and maintenance

>

> Date: Wednesday, September 1, 2010, 5:46 AM

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>  

>

>

>

>

>

>

>

>

>

>

>

>

> I'm sorry Trevor is sick. My son is off

> treatment, but he was nauseated throughout maintenance. The oncs didn't

believe

> that it could be from the maintenance drugs, but it clearly was. Fortunately,

> regular Zofran helped him. I'm sorry it's not working for Trevor. He also had

> Phenergan sometimes; have they mentioned trying that? It did make very

> sleepy, though.

>  

> as also sick a lot through maintenance. He had

> his IgG levels checked and was borderline low, and monthly IVIG helped him a

> lot.

>  

> never could tolerate more than 30-40% of his

> ideal mtx dose; it was too hard on him and his ANC just never held with more.

I

> am not sure what to tell you with the ANC being high enough, other than to

keep

> an eye on that.

>  

> also has peeling lips. It's not so much

> chapped as just peeling a lot. I've heard this is something called cheilitis

or

> eczema of the lips. For it's best if he eats well.  has never

> eaten well and has malabsorption issues.

>  

> I doubt this is much help, but it's all I

> know. Hang in there!

>  

> Beth 

>  

>  

>

> [ ] Methotrexate and

> maintenance

>

>  

>

> Our Trevor has been in maintenance for 18 months. Diagnosed July 2008,

> ALL.

>

> Three almost four weeks ago his methotrexate dose was increased to

> 100%. Ever since then he has been sick about every other day, but sometimes

> for a couple days in a row. We have been giving Zofran religiously, but it

> doesn't seem to be helping. He is a little congested, so we have a

humidifier

> going in his room. When he is going to be sick he wakes in the night and

wants

> to drink several glasses of water. We refrain from giving him too much since

> he usually just throws it all back up. He ends up throwing up a couple of

> times, sleeping the rest of the morning, and then he's ready by the

afternoon

> (as if he was never sick).

>

> Two weeks ago he had a lab draw and

> everything looked good. ANC at 672. So the doctor believes he has a virus,

but

> we are not so sure. Has anyone's kiddo taken leukovorin during maintenance?

We

> keep asking the doctor, but she says it should not be needed. Just trying to

> figure out if it is a virus, medicine, or something completely

> different.

>

> The other two odd things is his lip is raw. I'm sure it is

> having a hard time healing from the chemo, but the doctor keeps saying he is

> dehydrated. I am not sure how this can be since he is drinking and urinating

> all day (and nightly). The other thing is he wants to eat pretty much

> continually. Carbohydrates and dairy. Almost as if he is on steroids all the

> time.

>

> Know this is a lot. Looking for any help.

> Thank you-

> Dawn

> Bird, mom to Trevor (DS,5), a (3), and (10

> month)

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Chloe was only on around 33-35% of her 6MP and Methotrexate almost the entire maintenance schedule, her ANC always hovered around 1000-1200 the entire time. Actually even off treatment her ANC hasn't been above 1700.

Re: [ ] Methotrexate and maintenance

>

> Date: Wednesday, September 1, 2010, 5:46 AM

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> I'm sorry Trevor is sick. My son is off

> treatment, but he was nauseated throughout maintenance. The oncs didn't believe

> that it could be from the maintenance drugs, but it clearly was. Fortunately,

> regular Zofran helped him. I'm sorry it's not working for Trevor. He also had

> Phenergan sometimes; have they mentioned trying that? It did make very

> sleepy, though.

>

> as also sick a lot through maintenance. He had

> his IgG levels checked and was borderline low, and monthly IVIG helped him a

> lot.

>

> never could tolerate more than 30-40% of his

> ideal mtx dose; it was too hard on him and his ANC just never held with more. I

> am not sure what to tell you with the ANC being high enough, other than to keep

> an eye on that.

>

> also has peeling lips. It's not so much

> chapped as just peeling a lot. I've heard this is something called cheilitis or

> eczema of the lips. For it's best if he eats well. has never

> eaten well and has malabsorption issues.

>

> I doubt this is much help, but it's all I

> know. Hang in there!

>

> Beth

>

>

>

> [ ] Methotrexate and

> maintenance

>

>

>

> Our Trevor has been in maintenance for 18 months. Diagnosed July 2008,

> ALL.

>

> Three almost four weeks ago his methotrexate dose was increased to

> 100%. Ever since then he has been sick about every other day, but sometimes

> for a couple days in a row. We have been giving Zofran religiously, but it

> doesn't seem to be helping. He is a little congested, so we have a humidifier

> going in his room. When he is going to be sick he wakes in the night and wants

> to drink several glasses of water. We refrain from giving him too much since

> he usually just throws it all back up. He ends up throwing up a couple of

> times, sleeping the rest of the morning, and then he's ready by the afternoon

> (as if he was never sick).

>

> Two weeks ago he had a lab draw and

> everything looked good. ANC at 672. So the doctor believes he has a virus, but

> we are not so sure. Has anyone's kiddo taken leukovorin during maintenance? We

> keep asking the doctor, but she says it should not be needed. Just trying to

> figure out if it is a virus, medicine, or something completely

> different.

>

> The other two odd things is his lip is raw. I'm sure it is

> having a hard time healing from the chemo, but the doctor keeps saying he is

> dehydrated. I am not sure how this can be since he is drinking and urinating

> all day (and nightly). The other thing is he wants to eat pretty much

> continually. Carbohydrates and dairy. Almost as if he is on steroids all the

> time.

>

> Know this is a lot. Looking for any help.

> Thank you-

> Dawn

> Bird, mom to Trevor (DS,5), a (3), and (10

> month)

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

There is another anti nausea medication called Aprepitat.  We

can get it in Canada but it is very, very expensive.  We use it on our adult

oncology patients so am not sure if it can be used by children.  We are able to

 apply for special authority for it to be covered by the government if the pt

fails on other anti nausea medication (Maxeran, Zofran, Stemetil).  It might be

something to ask about.  Ive also seen Nabalone be used for nausea also when

other things didnt work.

Not sure if this helps or not.

From:

[mailto: ] On Behalf

Of jbaar@...

Sent: Wednesday, September 01, 2010 5:08 PM

Cc: Dawn Rink

Subject: Re: [ ] Methotrexate and maintenance

Hi Dawn

My son , 9 years old, is in LTM and only takes 58% methotrexate. When the

dose is increased his counts are affected, and he gets lip sores and abdominal

pain. His bilirubin also was a little high. He feels a lot better on the lower

dose. He is seen by a GI doctor due to abdominal pain and bloody stools which

he has experienced on several occassions. We were giving zofran but it didn't

seem to help him. I hope Trevor starts to feel better once he has a little

break.

Jo

---- Dawn Rink <breakofdayinaz@...>

wrote:

> Thank you, Beth. Your info is very helpful. It gives me things

to think about and watch out for. Trevor had a treatment today. My

discussion with the Oncologist went well. She was equally concerned that

he was continuing to get sick. Agreeing that it could very well be the

Methotrexate. His ANC was still good 1100, but his bilirubin was high.

So he is in fact having trouble with the Methotrexate and we are taking a

break from it and the 6-MP for a week to see if it comes back down. This

is also why the Zofran was not effective. We are hoping his lips get

better after taking this break too.

> We also decided he does need to see someone in GI. To rule out

celiac disease or other digestion issues. Does have CD?

> Thank you again, Beth.Dawn

>

>

>

> From: B DeHoff <dehoff5@...>

> Subject: Re: [ ] Methotrexate and maintenance

>

> Date: Wednesday, September 1, 2010, 5:46 AM

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> I'm sorry Trevor is sick. My son is off

> treatment, but he was nauseated throughout maintenance. The oncs didn't

believe

> that it could be from the maintenance drugs, but it clearly was.

Fortunately,

> regular Zofran helped him. I'm sorry it's not working for Trevor. He also

had

> Phenergan sometimes; have they mentioned trying that? It did make

very

> sleepy, though.

>

> as also sick a lot through maintenance. He had

> his IgG levels checked and was borderline low, and monthly IVIG helped him

a

> lot.

>

> never could tolerate more than 30-40% of his

> ideal mtx dose; it was too hard on him and his ANC just never held with

more. I

> am not sure what to tell you with the ANC being high enough, other than to

keep

> an eye on that.

>

> also has peeling lips. It's not so much

> chapped as just peeling a lot. I've heard this is something called

cheilitis or

> eczema of the lips. For it's best if he eats well. has

never

> eaten well and has malabsorption issues.

>

> I doubt this is much help, but it's all I

> know. Hang in there!

>

> Beth

>

>

>

> [ ] Methotrexate and

> maintenance

>

>

>

> Our Trevor has been in maintenance for 18 months. Diagnosed July 2008,

> ALL.

>

> Three almost four weeks ago his methotrexate dose was increased to

> 100%. Ever since then he has been sick about every other day, but

sometimes

> for a couple days in a row. We have been giving Zofran religiously, but it

> doesn't seem to be helping. He is a little congested, so we have a

humidifier

> going in his room. When he is going to be sick he wakes in the night and

wants

> to drink several glasses of water. We refrain from giving him too much

since

> he usually just throws it all back up. He ends up throwing up a couple of

> times, sleeping the rest of the morning, and then he's ready by the

afternoon

> (as if he was never sick).

>

> Two weeks ago he had a lab draw and

> everything looked good. ANC at 672. So the doctor believes he has a virus,

but

> we are not so sure. Has anyone's kiddo taken leukovorin during

maintenance? We

> keep asking the doctor, but she says it should not be needed. Just trying

to

> figure out if it is a virus, medicine, or something completely

> different.

>

> The other two odd things is his lip is raw. I'm sure it is

> having a hard time healing from the chemo, but the doctor keeps saying he

is

> dehydrated. I am not sure how this can be since he is drinking and

urinating

> all day (and nightly). The other thing is he wants to eat pretty much

> continually. Carbohydrates and dairy. Almost as if he is on steroids all

the

> time.

>

> Know this is a lot. Looking for any help.

> Thank you-

> Dawn

> Bird, mom to Trevor (DS,5), a (3), and (10

> month)

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

only recieved 100% methotrexate at the induction stage, it was too toxic for her so after that she would only recieve 75% for the remainder of her treatments. She only took leukovorin after IT mtx. not for the oral mtx.

Just curious is you humidifier cold air or hot? You may want to really look close at your humidifier and make sure it is sanitized or it could be doing more harm then good. Good luck with everything hope Trevor is feeling better soon.

ette

From: breakofdayinaz <breakofdayinaz@...> Sent: Tue, August 31, 2010 3:54:42 PMSubject: [ ] Methotrexate and maintenance

Our Trevor has been in maintenance for 18 months. Diagnosed July 2008, ALL.Three almost four weeks ago his methotrexate dose was increased to 100%. Ever since then he has been sick about every other day, but sometimes for a couple days in a row. We have been giving Zofran religiously, but it doesn't seem to be helping. He is a little congested, so we have a humidifier going in his room. When he is going to be sick he wakes in the night and wants to drink several glasses of water. We refrain from giving him too much since he usually just throws it all back up. He ends up throwing up a couple of times, sleeping the rest of the morning, and then he's ready by the afternoon (as if he was never sick).Two weeks ago he had a lab draw and everything looked good. ANC at 672. So the doctor believes he has a virus, but we are not so sure. Has anyone's kiddo taken leukovorin during maintenance? We keep asking the doctor, but she says it should not

be needed. Just trying to figure out if it is a virus, medicine, or something completely different.The other two odd things is his lip is raw. I'm sure it is having a hard time healing from the chemo, but the doctor keeps saying he is dehydrated. I am not sure how this can be since he is drinking and urinating all day (and nightly). The other thing is he wants to eat pretty much continually. Carbohydrates and dairy. Almost as if he is on steroids all the time.Know this is a lot. Looking for any help.Thank you-Dawn Bird, mom to Trevor (DS,5), a (3), and (10 month)

[Guest guest]



Hi, Dawn. has many GI issues and has been screened for celiac via the blood test and endoscopy biopsy many times. It always comes back negative. His GI issue seems to be recurrent infection (h pylori) and resulting malabsorption. He has a lot of trouble gaining weight. Whenever we treat the infection with antibiotics he does a bit better, but it seems to always come back.

There haven't been any easy answers to 's GI issues. But his GI doc has been great about testing and figuring it out. I highly recommend it. It is hard sometimes, though, to figure things out during treatment. Chemo seems to affect everything. It wasn't til he'd been off treatment for some time that it was clear his problems with nausea and weight gain were something other than chemo issues. Good for you for looking into things sooner rather than later! Good luck.

Beth

[ ] Methotrexate and maintenance

Our Trevor has been in maintenance for 18 months. Diagnosed July 2008, ALL.Three almost four weeks ago his methotrexate dose was increased to 100%. Ever since then he has been sick about every other day, but sometimes for a couple days in a row. We have been giving Zofran religiously, but it doesn't seem to be helping. He is a little congested, so we have a humidifier going in his room. When he is going to be sick he wakes in the night and wants to drink several glasses of water. We refrain from giving him too much since he usually just throws it all back up. He ends up throwing up a couple of times, sleeping the rest of the morning, and then he's ready by the afternoon (as if he was never sick).Two weeks ago he had a lab draw and everything looked good. ANC at 672. So the doctor believes he has a virus, but we are not so sure. Has anyone's kiddo taken leukovorin during maintenance? We keep asking the doctor, but she says it should not be needed. Just trying to figure out if it is a virus, medicine, or something completely different.The other two odd things is his lip is raw. I'm sure it is having a hard time healing from the chemo, but the doctor keeps saying he is dehydrated. I am not sure how this can be since he is drinking and urinating all day (and nightly). The other thing is he wants to eat pretty much continually. Carbohydrates and dairy. Almost as if he is on steroids all the time.Know this is a lot. Looking for any help.Thank you-Dawn Bird, mom to Trevor (DS,5), a (3), and (10 month)