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An update and a mess


jcawork

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I am almost scared to post the most recent info as it could change in 5 minutes. But here goes:

Last week had CT scan of chest, abd, pelvis it showed:

left lung nodes a bit bigger (New last scan)

ovaries the same

right lung mess from radiation last year plus small new nodes

T-11 Spine met still there shows (but had radiation and that’s ok)

New sacral spine met

Then I had the PET that was fused w/ the CT:

Saw the same on left lung

saw nothing on right but radiation damage

saw T-11 spine met/radiation area

3 cm liver mass (this comes up on every PET since April 05, never the CT and the MRI we did a few months back said nothing there)

New periaortic 2 cm mass (node)

Sooooooooo, this is a mess, they don't match and the PET did not give SUV reading for the first time and did not compare to my last PET of 7/05. This was quite unusssual and both my Onco and I felt it was a crappy, incomplete report. But, he decided progression had happened and gave me a script for Glevac (oral chemo) and took me off the Topo.

He then calls the PET Doc's boss and asks for a reread from the consultant they use who is considered the master.

Get ready:

He says on my 7/05 PET my vein was infiltrated and I didn’t get enough juice that’s why they didn't do a comparison on last Pet to this one.

He also says everything is better

Nothing new at all

He also says new periaotic node mass is really my uriter tubes from my kidneys not met.

I get a call at 10pm from my Onco telling me this and telling me we stay w/ Topo.

WHAT!!!!!!!!!!!!The hell is going on?????????

I am scheduled for my Topo all next week

I filled the Glevac but didn’t start it

I have no idea what to trust here and I am concerned about my tx being decided on wrong info

Oh yea, head MRI post WBR: Had 4, but they originally told me I had 3:

2 are gone, 1 is the same and 1 is a tiny bit bigger. I think plan is hold for one month and rescan. Then Gamma if bigger.

My bowel problem is at an all time peak. Nothing has helped, doesn’t seem to be cancer related, but I know it is. Full work ups X 2, got scoped. Its out of control and I am housebound it is so bad. Diarrhea is better, but bowel spasms have remained horrid. Its been 5 months of this nightmare. At the end of my rope on it.

So, there is my mess. Have no idea how to put it all together. Sorry it took so long to post and update, but I wasn't sure what to post. Sorry post is so long.

Thanks for all of the posts.

Jen

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Oh my gosh Jen, I am definitely feeling for you this morning, here you are fighting for your life and you can't even get a consensus? I wonder if you can schedule a meeting of the minds? Sounds like you feel pretty crappy (pun intended), so is there anyone that can call to schedule your docs to talk about the situation and make some informed decisions? I am frustrated for you!

I wish I could help, can your hubby call the docs?

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Oh Jen, geez. That IS a mess for you to deal with, huh. Any talk of a liver biopsy to find out for certain what that is? I had a few scans like that myself -- it is, it isn't, may be, may not be, etc., so the Oncologist finally said ENUF and the biopsy told us what we needed to know, and early enough that the Topo seems to be handling it so far.

I for sure don't know what to tell you. Maybe if there is a "guru" of some sorts they can copy all your scans and send them for a review -- from start to the most recent. Of course, that just adds one more opinion to things. I've been about ready to do that myself a few times, and the Oncologist says when she does, she sends just the scans and NOT the reports so that the new sets of eyes report what they see and not just parrot what others have said in the past to CYA.

I'm sorry you're having so much difficulty. This isn't easy on anyone, but you've had more than your share of bad breaks, and dangit, it is time for it to STOP. I still think of you often and pray that you improve and feel better.

Di

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Oh I am sorry you are going through this. It must be horrible to have bowel problems which you would think someone could easily resolve keep you in your house. I don't know what to say except I am thinking of you and hope you and your doc can get something resolved soon.

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Jen,

I am praying that the news the "expert" gave you is the correct news. Always take the good news!!! Sounds like a horrible time and confusing as well. I wish you much better news the next time around.

By the way, when I went through the WBR, my doc originally said I had 6 mets, then after WBR they would not give me an exact number. He said that the radiologists rarely like to give a number, I don't know why......

Best of luck...

TAnn

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I'm so so sorry for what you are going through.

I hope they get this straightened out for you soon,

you are going through so much then they have to do this with your scans :x

The bowel problem being so bad you have to stay home, that has to be horrible. I can't believe a doctor can't help you with that :?

Thinking of you

Kathy

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Jen,

How can they expect to make a decision when the news is so mixed? I know you must feel terrible and confused. I agree that sending all of your scans to a set of new eyes might be the choice here. And make sure they send them without the reports.

You are in my prayers Jen. I am sorry you are having to stay home. Bowel problems are certainly not fun. Hoping you find some real answers soon.

Nina

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Dear Jen,

Our thoughts and prayers are with you and your family during this most stressful time. Perhaps, new eyes will offer a different perspective. I know that with my Mother it has been very complicated and was overwhelming for her new Oncologist after her original decided to retire. There are so many variables that it can be puzzling even for the best of Dr.'s. Obviously, you are a strong strong person and hopefully you can bare another opinion or new dr. if this is the path you choose. No matter what, you are in our thoughts and prayers for some good news and relief soon.

Take Care,

Botley & Mother

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