Re: Playing catch up-Fran & Matt

[Guest guest]

Hi ,

I am so sorry that you have such a rough time with this treatment.

Yes Matt is on the 5FU and the Oxaliplatin too although I am not

sure that they are calling his regime FOLFOX.

The pain you describe and clutching the face is just the same for

him and it does look so excruciating. This is also day 5 for Matt

and he is still getting it today too.

We don't have any private insurance but are treated by the British

National Health Service. There would be no chance of anyone comiing

out to the home unless it was physically impossible for Matt to get

to the hospital. Obviously also, I am able to take him and look

after him if necessary so we are luckily not in that position.

I do hope you feel a little better in the coming days , as

it sounds as if you are having a worse time of it than Matt at the

moment. However, he is just on his 2nd treatment. As he says, he is

one sixth of the way through!

Warmest thoughts,

Fran

>

> Fran:

>

> I have been out of touch this week and missed your posts. I just

noticed

> that Matt has a pain in his jaw when he eats. Is he on FOLFOX?

I am asking

> because I have the same side effect and when I told my oncologist

he said it

> must be from the Oxaliplatin. It is a form of neuropathy. My

oncologist said

> it is a rare side effect. I had it even today (day 5 from my

first chemo day)

> when I was at the Farmer's Market and took a bite of a piece of

fruit. The

> people around me thought the fruit was bad when I grabbed the

sides of my

> face and made some kind of sound indicating I was in pain. I

told them it was

> a chemo side effect.

>

> I am also like Matt in that the third day (when I am unhooked from

the 48

> hour pump of 5FU) is my worst day and also the following day. I

am so sick

> that I have a home health nurse come to my house now to unhook

me. I used to

> have to find someone to drive me the hour drive to Santa

just to be

> unhooked and I would go in crying because I was so sick. It is so

much better to

> have someone come to the house. Ask Matt's doctor about this.

My insurance

> covers the cost.

>

>

>

>

>

[Guest guest]

Thanks MA, I have let Matt know that he is not alone on this one,

which was a little comfort I think.

Regarding the work issue he is still trying to puzzle that out as to

what is best to do. In a school it can be difficult to cover a

teacher being off for days here and there, it is almost easier for

their admin if he isn't there at all. However, he would like to get

back to work, partly to show the kids at school that cancer has not

made him disappear and that life does go on.

Warmest,

Fran

PS I am very tired and my grammar is a bit out of kilter, sorry.

>

> My husband had that first bite problem throughout most of his

chemo. It was worse on chemo weeks, but he had it all the time. I

wouldn't consider it rare as I have seen it mentioned by many people

on FOLFOX. All of his chemo buddies who were taking the same

treatment with him had it.

>

> His worse day was the day after he finished the treatment

(Thursday). Friday wasn't much better and then he progressively got

better till ready to start again. He worked throughout his

treatment except for Thursdays and Fridays of chemo weeks.

Sometimes on the Friday he could go in a little while if he had

something pressing.

>

> MA

>

>

> Re: Re: Playing catch up-Fran &

Matt

>

>

> Fran:

>

> I have been out of touch this week and missed your posts. I

just noticed

> that Matt has a pain in his jaw when he eats. Is he on

FOLFOX? I am asking

> because I have the same side effect and when I told my

oncologist he said it

> must be from the Oxaliplatin. It is a form of neuropathy. My

oncologist said

> it is a rare side effect. I had it even today (day 5 from my

first chemo day)

> when I was at the Farmer's Market and took a bite of a piece of

fruit. The

> people around me thought the fruit was bad when I grabbed the

sides of my

> face and made some kind of sound indicating I was in pain. I

told them it was

> a chemo side effect.

>

> I am also like Matt in that the third day (when I am unhooked

from the 48

> hour pump of 5FU) is my worst day and also the following day. I

am so sick

> that I have a home health nurse come to my house now to unhook

me. I used to

> have to find someone to drive me the hour drive to Santa

just to be

> unhooked and I would go in crying because I was so sick. It is

so much better to

> have someone come to the house. Ask Matt's doctor about this.

My insurance

> covers the cost.

>

>

>

>

>