Re: Re: To Leyla and Mehpare

[Guest guest]

Leyla:

I am sending my good wishes and prayers that your sister in law's scan will

show the tumors have shrunk. Please let us know. I know this is so hard on

you and the children. We are here to help you through this.

in California

In a message dated 10/10/2005 10:30:51 AM Pacific Standard Time,

eleyla@... writes:

Thanks Deb- Mehpare is doing well at the moment. Round 5/12 passed

with relatively little discomfort. I notice that some cycles are

better than others and can't figure out why.

The neuropathy in her hands is bothering her , to the extent that

she cannot handle zippers or buttons etc. Her attitude is ( and has

been ) amazing though- she does not complain and makes an effort to

stay positive most of the time. Call it denial or what you will, for

her this seems the best coping mechanism. Taking things one day at

a time, in mind size bits, she believes the treatment will heal

her . Hence her children (2 girls and 2 boys aged 4-11) have

settled down to accept that mom has good days and bad days , acc to

when she receives treatment. Being crowded and close in age they

tend to exist in their own world most of the time. The C word was

not pronounced to them , just that she was receiving treatment for

stomach problems. However, I am certain they may be picking up info

here and there. We have a large supportive extended family . So that

helps. Whatever their initial fear was, they seem to think this is

the way it is and appears manageable ...I sure pray it stays that

way .

For managing my own worries and fears , I surf the net and benefit

from all the info and support I get especially thanks to this group.

The scan is looming in the horizon - maybe in 10 days or so .

We're keeping our fingers crossed.

Best regards

Leyla from Istanbul

>

> We have friends returning from the US this week and will ask them

to

> get us some buttpaste (what a name, it sure sounds promising : ))

>

> Also, Re Erbitux : Mehpare's experience for what it was worth was

> as follows: She was diagnosed as stage 3 in March 2005 with a

tumor

> in the colon, and was perscribed and underwent 5fu and Radiation .

> Doctors reccomended she get Erbitux once a week also, but said it

> was up to her. The first time she tried it ( on the first

> traumatic day when she took 5fu, and her first day of radiation )

> she felt overwhelmed. She also had some skin rashes a few days

later

> and decided to opt out of Erbitux . In retrospect, I wish she had

> stuck with it. But who knows ?...

>

> As it turned out , 6 weeks of radiation and 5fu later , the pet

> scan revealed 2 spots on the liver , even though her colon tumor

had

> shrunk . Thus she was restaged as 4 just before her colon

surgery,

> which then included a simultaneous liver resection as well.

> Unfortunately, a month after her surgery as she started her Folfox

> plus Avastin regimen- the base line scan they took revealed 2 more

> liver lesions...

>

> Needless to say we are holding our breath for her next scan in a

> week or so, after she completes round 5/12 of chemo.

>

> I feel that If chemo is the preferred choice of treatment, perhaps

> one needs to be as aggressive as possible, with whatever is

> available incl Erbitux - while weighing the side effects of

course.

> ( Sorry for overstating the obvious - but these problems end up

> making one lost for words as we all know )

>

> Hoping Phil continues to do well.. I appreciate the support .

>

> Leyla

>

>

>

> >

> >

> >

> > Try A & D ointment and other baby products made for diaper rash.

If

> it is in

> > the anal area Preparation H or Tucks might help " cool " the

area.

> There is also

> > a product called

> > Buttpaste which a lot of people here use. These are available in

> drug stores

> > and places like Wal-Mart in the states and are hopefully

> available to you in

> > Turkey.

> > Narice

> >

> >

> > In a message dated 9/30/2005 5:21:41 AM Eastern Standard Time,

> > eleyla@s... writes:

> >

> >

> >

> > Does anyone have a better recommendation than Aquaphor for

severe

> > burning sensation in the rectum? Any medicated creams?

> > Mehpare takes oxycodone as a last resort, but we were wondering

> > whether the " experts " : ) have any in between suggestions?

> >

> > Thanks, & continued prayers and best wishes to all from

> > Istanbul,Turkey

> >

> > Leyla

> >

> > eleyla2002, istanbul , turkey

> >

> > * sister in law Mehpare 36;

> > has 4 kids ( age 4-11)

> > dxd with Stage 4 ccr

> > with multiple liver mets in Feb 2005.

> > 6 weeks of radition and 5fu

> > Underwent colon and liver resection in june .

> > finished 4th round of Folfox

> > with tolerable side effects.

>

>

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

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>