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Update on Brian's onc visit 6/30/05


Patkid

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Well,

The CT Scans did not hold good news. Brian has a lot of progression. He is only about 8 days out from his 5th cycle of Cisplatin and VP 16, but he has had about 25% growth in lung tumor and 35% in his liver tumors ( the tumors have all grown to gether so that it looks like one big tumor in over 1/2 of the liver). bloodwork and clinical presentation indicate that he is not strong enough right now for another chemo regimin (spelling?).

Doctor says we must count on Tarceva to hold off any further progression while we build Bri up. Doc does not feel that Avistin is a good option for Brian's specific situation, but he knew all about it and had obviously considered it by the way he responded to my question. We have to closely monitor and record Brian's temp, chills and night sweats. If he spikes a temp over 100.6 we have to bring him in right away. If he begins feeling more 'sickly': ditto.

Our goal is 'fluff Brian up' so he can have more chemo in August.

Plan:

IV Fluids PRN

CT scans 8/2

Onc appt 8/4

Tarceva (150 mg daily) in meantime

Bloodwork every 10 days

Brian is to avoid crowds and be careful when around the grandkids because his immune system is in the tank.

We are to immediately report any new symptoms, and he assured us that we can call him at anytime and he will see Brian right away, if we think that is best.

Brian is going to look at this as a month "off" and just try to learn how to conserve his energy throughout the day and to accept that he needs to admit when he needs to rest instead of pushing through.

My husband is awesome and he is back to being my Brian, again (optimistic and determined).

Thank you for all the prayers and support, we did not get the answer we hoped for, but, we feel God's presence in our lives and in our LCSC friends.

Onward,

Pat

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Guest Lensiedel

Dear Pat and Brian,

I am so sorry that you did not receive better news. I'm glad that Brian is feeling more optimistic again. I am praying very hard that the Tarceva works wonders for him and that God continues to give you the strength you need. I wish there was more I could do for you.

Wendy

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I'm so sorry, Pat.

When my immune system tanked and I wanted to spend time with very young children I would wear the kind of paper face mask that hospital workers and TB patients wear (I was on supplemental oxygen, too). The little ones thought they were interesting, and in the end, THEY were the ones wearing the face masks (pretending to by my Doctors). They also colored masks for me to wear. Made them think they were "helping" me.

Just and idea that worked for me. By letting them "help" it was less frightening for them.

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I am hoping the Tarceva does its thing for Brian like it has for so many others. Keep pushing fluids so he doesn't need the IVs, especially in the heat wave we've had lately. I wish you both the best, and hope the new plan is just the ticket for him.

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Pat and Brian,

Been waiting for this update and praying for you . It's in God's hands. You need to trust in God and do as the doctor has said. It will give you strength to get through this. In my time at this site, I have seen so many things turn around and I've seen them not, but one thing that didn't change, I felt God will help us through no matter what. Love you guys.

Love and Prayers ,

sue

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Pat -

Although the news isn't all that you'd hoped for, I gotta admire both yours and Brians positve attitude!

Hang in there and give Brian a hug for us - the future may still hold some success in beating back this monster!

Hugs and prayers,

SandyS

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Well, pooh! This must be so hard to take. Just try to keep thinking about the wonderful results that Bill's wife had with Tarceva, and several others are holding stable and getting some shrinkage with it, too.

Keep us posted, Pat, and give that great guy of yours a hug from me.

Love and prayers,

Peggy

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My husband is awesome and he is back to being my Brian, again (optimistic and determined).

This is the best part of your post, Pat! And that optimism and positivity will help...I'm convinced of it.

I'm sorry too, to know of the progression...but it sounds like the onc has a plan...and I want to also second FayA's advice about the paper masks. I've got some here...and have used them when my WBCs were very low...when my son and his girl came over.

Tell Bri to stock up on some good books/movies/magazines...whatever floats his boat...and then lay low, concentrating on building up his strength.

We're pulling for him AND for you too, Pat...to be strong...stay strong...and go after these tumors till they start to shrink!

Sending all good vibes and thoughts your way. The Brat team has lots of spunk...and I know it's going to help!

Sending a big hug, too....

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I am sorry the news wasn't better, but I am glad that you two have a battle plan in place.

I am hoping Tarceva is the ticket to NED's place or at least to NED's STABLE.

I am not sure the above metaphor works exactly, but I hope the meaning is clear, lol.

love and fortitude

elaine

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I say "Bleh!" to bad news (It's from one of Carolyn's toys... you so should here it. It would make you smile).

I wish the news had been better, but I'm praying that the Tarceva is going to do some major, major work. The next scans are going to look better!!!

(((((Brian and Pat)))))

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Oh Pat,

This is really not the news you wanted to hear. I am so sorry about this set back. That said, your positive attitude and Brian's will be the ticket. Lots of people have great success with Tarceva, so maybe this is just what the doctor ordered.

Keep us in touch and tell Brian we are all praying for him.

Nina

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Dear Pat and Brian,

I was so hoping for better news as I know you were too. You're love for one another will see you through what ever God's plans are. Brian, It's time to learn to R&R so you can fight this nasty beast and Pat with you in his corner anything is possible. You both continue to be in my prayers. Hang Tough!

God Bless you both,

Jane

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Oh dear Pat...not what we were wanting to hear :cry: . May Tarceva do the job for now and may Brian gain strength for the fight.

May your 'addietude' see you through these days.

Know that you are supported by all of us. We are always here for whatever you need.

Much love and so many warm hugs to you both,

Kasey

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