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Saw my oncologist today. Everything is a go for my second round of Oxi/xeloda.
Another $650 copay!! My Ca-19 is still really high but it hadn’t risen drastically as it had before while on Gem/Cis.
I got a call later from the oncologist at UCI regarding my tests for being in a trial. The tests were negative for the 3 mutations so I don’t qualify It was for PF-02341066, A C-MET/HGFR Selective Tyrosine Kinase Inhibitor!! Has anyone heard of this trial?
He said I could see about having another test done that would test 400 things to see about other trials BUT would cost $5000. – $6000!! We are not in a financial situation to afford that!
Will pursue to see if our insurance or something could help.
Just have to keep swimmin with my Jesus floaties! God is my Great Physician!!
Thanks! I have been ok with miralax 2 x a day & colace! Will see ONC tomorrow to schedule 2nd round.
Kris, Most of them are just red spots. A couple are kind of tender. I am dong ok. Was nauseated during the night last night. I can’t take the anti-nausea drugs cause I get constipated. I was a little constipated last night too. I take miralax 2 times a day & colace. This is without taking the anti nausea drugs!!! I have some hemp oil that seems to help the nausea and helps me sleep most of the time. Yesterday was the 1st day off xeloda for a week.
Praise God!! So happy for you. How we all long to hear those words!!
Holly, I am also taking xeloda but am also getting Oxalaplatin. I just finished my 1st 2 weeks of xeloda so will be off for a week and then back in for another Oxalaplatin & another 2 weeks of xeloda. I am anxious to see the bloodwork as mine was really low with Gem/Cis and my markers were very high too. I am hoping to qualify for a trial soon. Waiting is all we seem to do! I pray that God will provide the perfect treatment for each of us.
PattimeltAugust 28, 2013 at 2:53 pm in reply to: Haven’t been here in a while . . . . Update on me. #75033
Thanks for the encouragement! I feel good this morning! Going to get a relaxing massage & maybe some acupuncture!August 28, 2013 at 1:38 am in reply to: Haven’t been here in a while . . . . Update on me. #75029
well as you can see by my name I have had quite a few meltdowns myself!!
I am on my 1st week of Oxaliplatin & Xeloda! Strange side effects! When I take my 1st bite of a meal I have bad spasm pain in my jaw but only for the 1st couple of bites then it is fine!! Then I got teary eyed the other day & it burned really bad. I also got very constipated & hadn’t even taken any anti nausea drugs. If constipation is listed as a side effect I get it. Then I am in danger of getting diverticulitis. I had some pain yesterday but today it is gone! Thank God. I take lots of miralax & stool softeners. This is 6th day & I am feeling better. Not so sensitive to touching cold things.
I hope you tolerate your chemo cocktail! They are all different for sure. I had hardly any side effects with Gem/Cis besides fatigue & a little nausea but it didn’t work!
You have such a great attitude! I’m trying! Take care & God bless!
I have been taking cannibis tincture. It is an oil made from the cannibis leaves. The oil does not have the ingredient that makes you high.
I just started a new round of chemo yesterday & I have no nausea today. I am trying to see if this oil prevents the nausea so didn’t take my anti nausea pills yet.
My chemo is oxaliplatin and xeloda. I have been having sensitivity to cold from the oxaliplatin this morning. Tingling in my fingers & my jaw hurts when I take the 1st bite of something.
You are an inspiration! I pray for the good news you are expecting!
Thanks so much for the encouraging thoughts. I am feeling more peace again!!
Here is the poem I wrote last Monday.
TODAY AND TOMORROW
I’m eating my lunch
In my car by the sea
Trying to express in words
The feelings inside of me.
I have this rare cancer
That might be killing me
The doctors don’t seem to know
How long this could be.
I had radiation and chemotherapy
But the cancer isn’t gone
So we will keep on praying
For God’s healing to be done.
Each day is a new day
I’m not sure what to do
I get so tired and lonely
Worrying and feeling blue.
Sometimes I wonder
If I will ever see
The beautiful sandy beaches
In Maui and Waikiki.
Will I swim in the warm oceans
Or go back to Lake Tahoe
Can I plan to take another trip
To see the falls in Yosemite flow.
I’d like to revisit
New York, Boston and Maine
And walk on the streets
Without any pain.
So these days that I am home
What shall I do
Besides all the household things
Taking naps and reading too.
I have thought about sewing
Writing stories or maybe a book
Organizing all my poems
And scrapbooking pictures I took.
I love to spend time
With my family and my friends
I go to church to worship God
Which will never ever end.
So why should my days be different
Than they ever were before
Just because I have cancer
I won’t ever shut my door.
I’ll still dream about tomorrow
What the future may behold
I won’t dwell on the maybe’s
Or think my life isn’t whole.
The good news in all this
The one thing that I know
Is that whatever may happen
With God I will go.
He promised me a mansion
On streets paved with gold
No more sickness or crying
Where I never will grow old.
This is my blessed assurance
I know that it is true
No wondering or worrying
No need to have a clue.
I have such joy and peace
In this hope I have found
Jesus will never leave me
And to heaven I am bound.
I don’t know the timing
Of when this could be
It could be tomorrow
Or many years – we’ll see!
I hope you believe that He loves you
That He died for you too
So someday in heaven
We’ll be together beyond the blue.
PAT MORSE 8/5/13
I have had some problems because of my HMO insurance but I did have an authorization to see Dr. Seery at UCI for a consultation. She was on top of treatments for CC and is helping me pursue a trial for my CC. This is in Orange County in So Cal.
My MRI was changed to next Tuesday! They had to change it because it wasn’t scheduled until 5:45 p.m and because I react to contrast there needs to be a nurse there. Well they know that when they made the appt.! I am so fed up with the healthcare system. Everything has to be authorized and that means more waiting. It has been a month now with no treatment because of waiting. I sure hope my tumor is not fast growing.
My CC was found on a CT scan when I was in the hospital for diverticulitis. They did not know what it was then. They thought it might just be an infection! So nothing was done in the hospital. This was in September. After I went home I saw my doctor who had me do bloodwork which showed nothing wrong in my liver. So then I saw my gastroentologist & she had me get another CT scan & then a biopsy which diagnosed the CC. This was in November. It took 2 months to get the diagnosis. Then went to my oncologist who referred me to UCI. Because of having to wait for all the authorizations to do anything I saw the surgeon at UCI who then told us surgery not possible so sent me to radiology. I finally had SIRTEX radiation in February. 2 treatments. These did not shrink my tumor. So then back to my oncologist for GEM/CIS chemo. This started in June. I had 2 rounds & then my bloodwork showed platelets were way off & my CA 19 was higher than the last time. So now I am on hold. Having an MRI tomorrow & then another biopsy for the gene testing to see if I can be on a trial. Waiting is hard because I always fear the tumor is growing!! And why hasn’t my tumor shrunk with the treatments I have. This cancer is crazy & doesn’t seem to work the same for anyone!! I have to put my faith in my Great Physician!!
What trial are you doing?
Thanks for the encouragement. I will keep on keeping on! My hope is in the Great Physician! This is definitely a roller coaster ride! I am doing a lot of screaming! Also enjoying to good days as much as I can!!