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Update-I don't even know where to start-its been a nightmare


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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god, Jen. what a lot to sort out, under what must be extreme emotional stress. I read your post a few times and it's still confusing. I wish could offer more than my support and prayers. we're with you, and I trust that, after everyone takes a few deep breaths, it'll all fall into place.

xoxo

bunny

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Jen,sorry you have so much to deal with.I know how frustrating all the different viewpoints can be.I get that all the time,I feel it's because of the involvement of so many diff.drs.and specialists.

I still see all them however as I believe several heads are better than one.

Hope you are able to get it all sorted out and remedied soon.

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I, too, read your post several times to get it sorted out in my head. It was difficult. Poor you. I am guessing this is NOT the time to be trucking off somewhere for another opinion. Seems like there has just been too much going on. But maybe that would be an avenue to pursue.

I wish I could offer some advice, but can't. I can ony continue the prayers that have been offered for you for months now. Hold onto hope that this can and will be sorted out. I will hold onto that as well.

(((Jen))),

Kasey

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Jen, you hang in there. Trust your oncol. The dr's that read reports all will vary on opinions. It sounds like you are somewhat stable. Get that new treatment going. I do feel so bad for you though---diarrhea can be very exhausting. it drains all the energy out of your body. Take care. God bless,Nancy C

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Jen-what a mess. Have you thought of making an apt. with another facility? One that specializes in Ca?? Somewhere not *ss. with the one you have been going to?

Just as a second opinion on what has been going on the last few months? I have not had to do this but I have never had the problems you have had. It seems like none of these people can agree on one thing. I think your onco is doing well but if he is not getting good info then he will have problems too.

I think about you often. Please know that you are being prayed over.

Love Cindy

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Jen,

I am so sorry that this is so confusing- Please take a deep breath-breath in , breath out......As are everyone elses, my prayers and thoughts are with you-I really do not know what else to say but please, hang in there- positive thougths going your way !!!!

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yes...it's really confusing. It makes people angry because of the carelessness. But if topo works (at least no more bigger/ new mets), then it should be continued i think.

Hope that you are feeling better very soon coz anger do no good. Back on the right track is more important.

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Jen, I can only imagine what all is running thru your mind right now. Maybe on Monday give the doc a call and talk to him again about it all, since it wont be 10pm. But I hope he is right and things are actually better and not worse. You have had more than enough and more than any one person should have to deal with.

You are in my thoughts and prayers

Kim

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WOW!

I don't know what else to say! Holy CRAP! :oops: Oops poor choice of words! :roll:

I sure am sorry all this is going on for you. You have been through the Mill and back!

God really is with you, because he's giving you strength to go through this. :? (I think?)

(((((((JEN)))))))

SO SORRY JEN! I'll continue to pray. Sure wish I could do a LOT MORE FOR YOU!

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OH, wow. I just don't know what I could say to that. It is a mess, and something you shouldn't have to be dealing with.

I'm sending positive thoughts that this get straigthened out soon. I wish I could do more. Follow your instincts. We are all praying for you.

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Jen, I am so very sorry to hear about the huge problems regarding what the scan readings are. Very frustrating and nerve racking. You would think communication would be important to the docs but apparently not. My dad had severe colitis. Doc said he had "some cancer cells" in his intestinal trac. He started taking a natural supplement called intestiv. He has done fantastic since taking that. He thought he was going to die before due to diarhea, gas, and other colon problems. Now he is like a different person. this supplement might help you. My three sisters and I are praying for you continually. They ask me how you are doing every day. You have a foursome here praying for you. God bless you and your family. pammie

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Hi jen,

I share your confusion..Please read my post under SCLC that reads PET scan vs. CT scan..These two stories are almost the same!! This is so terrible.These PET scans scare a person half to death..All the places that had radiation, light up like a christmas Tree..Yet, they tell us there are more mets in other organs..What gives here!!! I am so upset right now for my poor brother, I can scream..I am dying to get to this Oncologist tomorrow to get the whole story..My prayers are with you..

Donna :?

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Jen...

Not sure how you feel about yet another opinion...but if you have copies of everything...especially recent tests, scans, etc., maybe another opinion isn't a bad idea?

So many of the choices we make depend on trust. Who DO we trust? Especially when there are conflicting opinions, it's not always easy to know which doc to listen to and God knows, the stakes could hardly be higher....eh? :(

You're due for a positive break in all of this, I do know that. And I hope you get it, hon. Keep trying to take this one step at a time, asking questions as you go and pushing for some answers.

I don't know but what your bowel issues might be solely related to the stress you are under. Just because you have cancer doesn't mean they are cancer-related. You know you stress out over some of this and all by itself that could cause IBS or worse.

Many years ago when I was well into Graves Disease but hadn't been dxd yet....I had diarrhea from May to Oct. It is symptomatic of hyperthyroidism and a goiter, I guess. Several meds were tried but it wasn't till they put me on something called TR Opium that it was resolved. Don't know if that med even exists or is used anymore...but ask about it. I don't think there really was opium in it...but what do I know? This was over 30 yrs. ago.

Sending you strength vibes, hon....and all my best thoughts and wishes otherwise. Hoping you get some answers AND some relief soon!

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